January 14, 2010 - Lisa - Reeds Spring, MO (USA)
I was told 2 years ago that my son Joseph has NBIA, it was by far the worst day of my life, at first I didn't want any research done on my son, but I have changed my mind, I don't want to just give up.... I would also like to send you some pictures of Joseph so that it can be added to your site.... my name is Lisa Jordan... my son is Joseph Jordan age 17.
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February 1, 2007 - Maria - Summerfield, NC (USA)
Tracie and family, I am so sorry to hear about the passing of your angel “Jenna”.  My heart goes out to you. Our family will keep you in our prayers. I was kicking myself wed.  for not asking Dr. Kat to send you in to meet us.  I looked for you on the way out but didn't see anyone I thought was you.  This battle we have to fight is not something anyone should have to go through. Maria doebler and family
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January 31, 2007 - Martha - Texarkana, TX (USA)
To Tracie and Jessie, Jenna, and family,  Your whole family is in our prayers.  I encourage you to talk to each other daily about your feelings no matter what they may be. Prayer and communication are the best for helping in troubled times. Blessings to you all.    Martha Nell, mother of Brandon (age 32.
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January 30, 2007 - Jesse - Lexington, NC (USA)
Recently  my  daughter had a G tube to help  with  her non ability  to swallow. Tracie  whom  is Jenna's  mom  has  been with  her as  well  as  myself  in  the  hospital.  Jenna  has  been  released, but is experiencing  the  Dystonic  Storms. The  lack  of  Dr.'s  willing  to give  enough  medication was  a  constant  battle. Hospice  is  in place right  now  and  I think  this  will  help  tremendously. My  question  is for married  couples  with  children  that  have NBIA how  can  we  make it  together, threw  the  giant  hurdles.  The past  is  exactly  that. I would  like  helpful  ideas  to get  my  whole  family  into the future as a team  doing this  as  one. I'm  Daddy and I  feel  Jenna  knows the  difference  when  a  loved  one  is  there.  Tracie  and  our  family needs  prayer and  to bring  peace  to our  family  so  WE can  best  take care  of  Jenna!   Thanks  To   Everyone...  IN  MY  Thoughts  and prayers.
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December 1, 2006 - Tammera - Spokane, WA (USA)
I am interested in communicating with adults who have been diagnosed. Please email me at newvintagestudio@yahoo.com. I am feeling very down and there is no support for me locally.
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October 30, 2006 - Tammera - Spokane, WA (USA)
Thank you for this site. I guess I am not ready to tell my story. I was initially diagnosed with MS more than ten years ago. I was diagnosed with HSS last Thursday after extensive testing for the past few months. I feel grateful as I am 46 years old. I have had severe episodes, remissions, since I was a teen. More later. Thank you. 
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October 27, 2006 - Marci - Delran, NJ (USA)
I am the primary care nurse for a 13 year old girl who was diagnosed with NBIA in 2003.  I am with her 5 days a week all day.  She has a fabulous family and I am honored to be able to be a part of their lives.

I am still learning about this disease process and am looking for some suggestions from a nursing or non traditional stand.  My girl has been suffering from severe stomach pain and gas. Medication only does so much and sometimes the pain is so severe it will wake her from a very deep sleep and there is little I can do for her.  If you could say "10" is the worst pain I would rate hers a "12".  If anyone has any suggestions for something I could do for her that would be within the scope of practice but something a doctor would not be required to write an order for I would greatly appreciate it. I understand that some children with NBIA suffer from stomach spasms and am hoping for some ideas I can take to the doctor. We are all a little stumped by this. I can be contacted at  mommie916@comcast.net. 
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August 14, 2006 - Mark - Tampa, FL (USA)
Disability advocate 
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April 27, 2006 - Kris & Mike - Middleboro, MA (USA)
Wanda, please contact us, we are in Middleboro, Ma. We have 2 boys who have NBIA and have been dealing with this for over 7 years. We can share info. Kris and Mike McGourthy rural9@aol.com or (508) 947-8703 
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April 17, 2006 - Wanda - East Boston, MA (USA)
Hello - I'm a mother of a 11y/o diagnosed with HSS about 3yrs ago. It has been of help to read from your stories and information about research, but sometimes I feel alone in this. I'm latina, and don't have any support system around this at all. I would like to know if there are any parents that live in the area that I can connect with. Your support/information will be greatly appreciated. 
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March 17, 2006 - Pam - Shorewood, Il (USA)
Hi, To anyone on this guest book - I usually use the listserve but check this site once in a while. We have had a son with NBIA practically since birth. He is 19 yrs old now and been thru pretty much everything. I would love to share any information that my help those of you who are just going thru things for the first time. My e-mail is pams_60431@Yahoo.com if you would like to write or welcome calls my number is 815-741-3132. My heart goes out to all of you. Pam mother of Ken 
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February 22, 2006 - Jeniffer - California (USA)
Great site - Cheers for the good work! 
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November 1, 2005 - James - New York, NY (USA)
Great site. Thank You :) 
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October 24, 2005 - Paula - Middleton Park Grove - Leeds,  (UK)
Hi there, Paula here, sad news guys, after 4 long years of  battling since diagnosis Mikey passed away 28/9/05. It was sudden he was not poorly and slipped away in his sleep peacefully. The only regrets I have is that he was at a restbite center, he was alone and I was not there to hold him. The only advice I can give to parents is stay strong and never get complacent because that’s what we did and we missed his final hours. All our love and support goes to all of you, will keep in touch. 
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August 26, 2005 - Cheryle - Geraldton,  (Western Australia)
Hi I wish to let you know I have changed my email address. It is now jho33118@bigpond.net.au thank you Cheryle Holmes Geraldton Western Australia. Mother of Steven 
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July 12, 2005 - Heather - Bartlesville, OK (USA)
My thoughts and prayers go out to the Mayfield family. This is a very interesting website and I am amazed at what these families go through and the strength and courage it must take to endure this disease. 
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June 12, 2005 - Paula - Leeds (UK)
Hi Kate, Paula here. Please get in touch I am sure we can share experiences. 
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June 8, 2005 - Late - Nottingham (England)
Hello all. I am new to this so please forgive my typos or awkwardness. I am caring for a little one with Hallervorden-Spatz. She is 9 now and in a wheelchair, the onset is very fast. I have looked on internet for information but there is not much as I can see... she is still attending her school that is where I work as an assistant teacher... I just wonder and I know u cannot really say but when does school become inappropriate... I really am struggling to say what I mean.... she cannot follow the curriculum or join in physical education.. she does like to see her friends... I do not think I am coming over well.... is it just parental choice or down to how ill she becomes...thanks for listening... Kate 
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June 5, 2005 - Paula - Leeds (UK)
Hi there, Paula here. It’s been a while but lots happened. Mikey still with us but has had a rough couple of months, he broke his leg we were told afterwards that this is not uncommon when children are immobile because their bones thinnen very quickly. Urine leaked down the inside of his pot causing him a very bad pressure sore underneath the pot and he then had a urine infection. But there is some good news to tell I gave birth to a beautiful baby boy on the 3rd of March, he’s healthy and growing fast. Our pediatrician came today and told us that some children in the UK with this disease have had deep brain stimulation, and said this could be something we could consider to control muscle spasms , has anyone had this done, have you any positive results or just some info, if so please me on PAULA.COOPER3@BTINTERNET.COM
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December 16, 2004 - Carla - Covington, TN (USA)
I just wanted to wish the families a Merry Christmas & Happy New Year. It has almost been a year since we lost Jacob and it has been the worse year of my life. Just give your kids an extra hug for me. Everyone says it will get better as time goes on, I sure hope so. So have a good XMAS and maybe we will see you at the convention. Mark & Carla 
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October 19, 2004 - Paula - Leeds (England)
Hi there, Paula, just a quick note to say that everything is going really well at the moment. Mikey is doing well, he has not been in a wheelchair for about 2 years, but we have a new one coming in a couple of weeks and are hoping to get him back into one and take him out and about. Our other children are doing o.k., our youngest started school in September. He is really enjoying himself although the teachers are finding him a handful. We have more good news after Mikey’s diagnosis in Jan. 2001, a miscarriage in Dec. 2002 and a little boy still-born at 39 wks. in Nov. 2003, we are very pleased but anxious to be expecting another baby in March next year. Will let you know how we get on with the wheelchair later and hopefully let you know of our new edition to the family. 
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October 15, 2004 - Sheila & Mark - Edwardsburg, MI (USA)
We have a daughter that was diagnosed with HSS in 2001. Her name is Keira and she is 16 years old. She is the most bubbly person we have ever seen. Keira’s onset was in 1999. And, it was her walking and falling a lot that had us concerned. We took her to many doctors in Elkhart, Indiana and not one knew what it was, but one referred us to Riley Hospital in 2001. Yes, they took a second MRI. Yes, it was HSS. We thought oh my god, why Keira. Now we are taking it day by day. She is on baclofen pills since 2001. She has had botox shots all in her legs for the last 2 yrs but now the doctor said they are working for her legs and now they want to put a baclofen pump. We don't know what to do. Please, if someone has any info for us E-Mail us at sheilanma@aol.com. Thank you Sheila 
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September 30, 2004 - Julie - Ipswich (England)
Hello everyone, I have a son, Joshua, with Hallervorden, he is 13 years of age. Recently he had to have a tracky done as he found breathing very hard work but since this has been done he has improved and does not struggle so much now. He also has a gastromy which was done last year. He always amazes me, he just takes everything in his stride and does not make a fuss. All our children are so brave and I really admire them all. Josh is not at school now but is doing really well and hopefully will be back at school for a couple of afternoons a week shortly. Take care everyone and god bless all our children. Julie 
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September 13, 2004 - Cheryle  - Geraldton, W.A. (USA)
Hi, my son was diagnosed with hss in 1997 as I also had never heard of this I looked on the internet and was very disturbed with the outcome I was reading. I live in Western Australia and was wondering if anyone has heard of someone else with hss in Australia? My son is now 27, has a walker and has some speech and swallowing difficulty. He has had botox and has a brace on his right leg. He has had a lot of falls. I receive your newsletter and read it with admiration for you all. Thank you, Cheryle. johnholmes@modnet.com.au
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July 28, 2004 - Lukkana  - Nakronpanom (Thailand)
I have one brother is Hallervorden-Spatz Syndrome about 7 years. In Thailand Dr. comment about him is not cure. He suffering from pain everyday. My mom is suffering follow him and medicine is expensive so much. I and my family hope to NBIA help us about research data or  update method of cure. Help me and my family. Please!! Thank you very much. 
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July 19, 2004 - Carrie - Madera, CA (USA)
Katherine Lyn Paddeck, August 4, 1961 - September 21, 1979
Kay was my little sister, we were four years apart in age. I learned so much love and caring from such a tiny, beautiful angel. During her lifetime she wanted so much to grow up and be just like her big sister. What she suffered through and how she was virtually ignored by the civilian medical profession, saddened me. Her tests from the Air Force may have plowed way for treatment much sooner, for others. I read the entry for the young man who died in 1983, he must be the child we heard about, when Kay was still alive. I wish all of you kindness, love and happiness. Kay would have been glad to know you all. She was a very kind and bright light. God Bless you. 
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June 26, 2004 - Yvonne - Grand Forks B.C. (Canada)
My son Ricky was born in 1965. He passed away Dec. 1983 from Hallervoden-Spatz. We did not know he had this until he passed away. At that time we were told there would never be any research done on this disease. And we were told he was the 43rd. known case in the world. At that time there was no support or very little knowledge of this disease. So not much was available to him. He was the most amazing young man. And gave those around him so much inspiration. I was amazed when I found this site, and see how many other children suffer from this disease. My heart goes out to all of you and my support. You are very lucky to have such a site and to know that you are not alone. Yvonne
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June 20, 2004 - Paula - Leeds (England)
Hi there, just a quick note to let you all know that Mikey picked up from the last time I wrote. He made a remarkable recovery which surprised everyone. He has now been back home for 7 weeks and doing quite well. We were so close to losing him, but from somewhere he found the strength to fight back and carry on. Will keep you all updated, bye for now.
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April 3, 2004 - Anabela - Niskayuna, NY (USA)
Gerry, Alyssa and I would like to thank everyone for their thoughts, cards and prayers after we lost our precious angel Sabrina. We thought we were prepared but nothing can be done to prepare us for the loss of a child. Our hearts are broken that we can longer see her smile and laugh but also we are relieved that she is no longer suffering from pain. We pray that now she is able to do all the things that she could not do here on earth. Sabrina was a very special child who always had a smile for everyone. She was a fighter until the end. Sabrina taught me so much but the most important thing was to never give up. That is why I believe that she is watching over us and giving us the strength to find a cure for NBIA. We are more determined then ever to help in finding a cure! With love Bela, Gerry and Alyssa (In memory of our angel Sabrina who is greatly missed and will never be forgotten)
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April 1, 2004 - Shazeena - Luton (England)
Hi, my sister was diagnosed with Hallervorden Spatz disease in 1991. Gradually over the years with disease progression and repeated chest infections, she pasted away in February 1998 at the age of 14. She was a inspiration to us and we cherish all the memories that we shared together with her and it's because of my sister that I am the person I am today. She gave me the strength and determination. I am now 21 yrs old and studying biomedical science and hope to go into research and maybe even help with developing new treatments for Hallervorden Spatz disease. Information about this disease was very rare at that time and I am glad that this website is dedicated to those families that are going through what I did. After reading the comments made by other individuals in the guest book I would just like to say that may God keep you safe and give you the strength to be strong, you are an inspiration to all. Anyone wanting to know anything or just talk I am more than happy to reply. Take care
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March 26, 2004 - Pam - Shorewood, IL (USA)
To all those who live in the UK- I have not heard anyone mention that they are trying TBZ (Tetrabenazine) probably under a different name there. We are not able to obtain in US and must get from Canada or England. Have any of you thought of trying? It seems to have helped many of the children in US. Pam, mother of Ken 17 yrs.
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March 13, 2004 - Paula - Leeds (England)
Hi Paula here, just a quick note to let you all know how it's going. Mikey has not been well for the last few weeks, he's had one chest infection after another. I know now slowly we're losing him, he is getting very tired and sleeping most of the time. All I can do is love him and give him the best care possible, I know in myself that he's suffered enough now and can't go on like this for much longer. Any-one in the u.k who wishes to get in touch please feel free all my details are on the networking list. Will be in touch soon.
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January 29, 2004 - Derek - Liverpool (England)
HELP, My daughter has just been diagnosed with HSS and I don’t know how to get help in the UK. We have known for four days now and we are all mixed up. We go and see the doctor in a day’s time and we have got a lot of questions to ask. Anyone in UK can help e-mail me please. dellboy@kirkby25.freeserve.co.uk
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January 19, 2004 - Mark and Carla - Covington, TN (USA)

I want to thank everyone for their thoughts, letters and prayers after we lost Jacob. It's been devastating although we attempted to prepare ourselves for that day. We find consolation in the fact that he is with God and totally healthy and able to do all the things he missed out on in this life. We can't bring him back but one day we will be together again, in Gods time. Our hearts ache missing his presence and smile. It will take time I know to get through this but we are survivors. All the support we received from the HSS/NBIA association has made such a difference for us. We learned that we are not alone in all this because we have met so many new friends just like us, going through the same thing who gladly offered their friendship and support. We wish to offer the same love and support to this organization as we did when Jacob was still with us. I couldn't have survived this without you guys. Expect to see us at the next conference if for nothing else to offer our experience and feelings during the beginning, middle and the aftermath of being blessed and chosen to care for these angels while they are here with us. Never give up the hope that Dr Hayflick and team will find the answer to this puzzle. Pray for them that they will find the necessary breakthrough so we can defeat this disease. With Love and prayers to all of you, Mark and Carla (In honor of our hero, Jacob)
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January 7, 2004 - Barbara - Trzebinia (Poland)
Hi, I am the friend of Polish family Augustyniak whose son is diagnosed as suffering from HSS. They desperately need a contact to any Polish family with the same problem. Does anyone have any contact to Draheim family in Poznañ?
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November 26, 2003 - Paula - Leeds (UK)
I would like to respond to the lady from Ipswich U.K, my 9yr old son is currently on Benzhexol and has been for about 18 months, he suffered awful muscle spasms lasting anything from 5 minutes to 23 hours at a time. The dosage of this medication has to be increased slowly but Mikey is currently taking 30mls four times a day plus 2 PRN doses of 25mls if needed. He is also taking 5 other different medications with this which are keeping his spasms under control at the moment.
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November 7, 2003 - Carla - Covington, TN (USA)
This question is for all the parents of the children who have had a pallidotomy. Were they required to be awake during the surgery, and able to talk to the doctor? We are going to a doctor Wednesday to get him to do the surgery. But I have heard the children have to be able to speak to the doctor. Do they? Please let me know ASAP. Carla (Jacob's Mom)
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October 29, 2003 - Dianna - Clinton, IA (USA)
I visited your website back in April of 2000. Since then, the young friend whom I had told you about has passed away. She died on October 23, 2000. So it has been two years and six days since I have had to face the ugliness of the disease that is HSS. It has left a tremendous impact on my life. The horrible way that it left my young friend struggling to live was devastating. When God finally called upon her, only then was she truly at peace. As I visited her gravesite just the other day, I spent several minutes reflecting on the wonderful memories that I shared with her. The hardest part to remember was the last few days that she spent in the hospital, struggling to hold on. It was at that moment, that I also remembered that there are so many others still out there struggling as well. I hope that some day there will be a cure. I am so glad to see that there are some treatment methods that are helping some victims cope. You are all in my prayers. May God be with you all.
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October 29, 2003 - Debbie - (UK)
I looked on this web site, as I know someone who has suspected HSS. I think all of you are truly amazing people and a inspiration to us all. Please continue to be strong, I'll hold you in my prayers. XX
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October 8, 2003 - Julie - Ipswich (England)
Hi, I have a son Joshua aged 12 at present he is doing well, we have just had his medication increased to 7mls 3 times a day. He is on Benzexhol Syrup which does seem to help with the spasms, but I have been told that this is highest amount he is able to have so don't know what he will go on once this does not help any longer. I had another son with the same Hallervorden Spatz Syndrome but sadly we lost him 4 years ago he was aged 12. So it is very hard as we know exactly what we face with Joshua but we try just to take everyday as it comes.
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October 8, 2003 - Jessica - East Greenbush, NY (USA)
My family has been best friends with the Belcher Family from NY, for about 30 years. Cheryl Lamos and my mom are best friends and the work this association is doing to research this devastating disease is remarkable! I'm so happy such great strides are being made in finding more and more information.  Thank you!!!!!!!!
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October 7, 2003 - Kim - Conway, AR (USA)
Our son Ben was recently diagnosed with this disease. He is almost 9. For 8 years we have been told he had cerebral palsy. His speech started to decline this summer so we had another MRI several weeks ago. That's when we found out. We are in shock. I would appreciate any information or support from those who are also going through this. We have a 13 year old son who has shown no signs of the disease so we are hoping he is okay. Thanks. Kim
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October 1, 2003 - Pam - Shorewood, IL (USA)
Our son is having some severe back and leg spasms at present. We have had a wonderful summer but usually each year at this time the syndrome kicks in and pain returns. I would like to know if anyone has tried acupuncture with needles and how it worked. Also, has anyone tried the TBZ mentioned in the last newsletter and what the side effects might be. Ken will be 17 on Oct 31st - we hope to be able to give him a somewhat pain free birthday. We are very thankful for each time he has been brought out of the pain, and it's been many. Thanks, Pam, e-mail pams_60431@Yahoo.com
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September 28, 2003 - Kris - Middleboro, MA (USA)
Mark& Shelia, I know how hard it is for you right now, especially with the age your daughter is. Our Michael just turned 15, he is very frustrated with the disease. It's a daily battle, and added stress to your family. We have 4 kids 2 with the disease. It is very important to keep your daughter healthy, talk to your dr. about the flu shots. If you need to talk, email us directly Rural9@aol.com. Good luck, Sincerely, Kris & Mike McGourthy.
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September 23, 2003 - Patty - El Cajon, CA (USA)
I would like to encourage NBIA families to join our new listserv (see home page for info) as a source of support and information. It reaches all those subscribed with one e-mail and is a more efficient way of reaching other families than posting in the guest book and hoping someone will see your message in the near future. It also offers a bit more privacy as only those subscribing will receive your message. If you have any questions, please contact me at pwood@NBIAdisorders.org.
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September 23, 2003 - Pam - Shorewood, IL (USA)
Hi Mark and Shelia: We are all here to help - My son is going to be 17 soon. We have dealt with this disease for most of his life. Would be glad to help. My best advice right now – build up the immune system. Pam
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September 8, 2003 - Terri - Tucson, AZ (USA)
Mark and Sheila, I am sorry that you have found yourselves in the middle of this disease. Here, you will find caring families that will offer a wealth of information. We are all here for you. Feel free to contact me at jtbyler@comcast.net anytime. Terri
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September 8, 2003 - Mark - Covington, TN (USA)
Hi Mark and Shelia, You are lucky to have found this site so soon after diagnosis. If there’s anything we can do or questions we can help you with please feel free to email me at wycote@aol.com. Mark
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September 5, 2003 - Mark and Sheila - Edwardsburg, MI (USA)
We just found out on 9/04/03 that our daughter has NBIA and we need help with any info on this NBIA. We are so scared for her. Her name is Keira and she's 14 soon to be 15, and she had symptoms of this in 1999, but no one could find this until we took her to Rileys hospital. They compared MRI from 2002 to 2003 and then they found it. We don't know what to do. We have 5 children. If anyone can help us, Mark and Sheila.
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July 20, 2003 - Pam - Shorewood, IL (USA)
Hi Anabela; This may be a little late as I find it hard to get on the computer very often. My son has mouth problems for a couple yrs on and off. He would bite his tongue and nothing we tried, mouth guard, wash clothes to keep the side open, even Botox to the jaw so we finally started having his teeth pulled. I know this sounds extreme but we started on the side where he was biting the hardest and then he would stop and maybe a few months later start another place. We are now done to six upper teeth and he still has a beautiful smile and we haven't seen any biting for yrs. We were fortunate to find an extremely caring and gentle oral surgeon. Please feel free to call or e-mail me. Good Luck.
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July 3, 2003 - Mark - Covington, TN (USA)
Anabela. Have you considered botox around her mouth or jaw muscles to give some relief? We have had good results with Jacob's neck and back.
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June 30, 2003 - Anabela - Niskayuna
Hi Mark. I totally agree with you. We should use the guest book more often to know how everyone else is doing. Nobody else knows exactly what we go through then us. At times it seems that we are our children's doctor because their own doctors have no idea what to do. We are the ones who come up with suggestions, at times it is very frustrating especially in my case with Sabrina. She has been going through a very rough time. She has been having horrible mouth spasms. We came up with a mouth guard. It worked for about a month. The only time she is relaxed is if we hold her chin. She has bitten a little piece of her tongue due to the pain. This year she has been home more than in school. It is starting to impact her daily life. If anyone else is going through the same thing. I would like to know maybe together (like you mentioned) we can come up with some ideas. Bela
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June 29, 2003 - Mark - Covington, TN (USA)
This site is here at our disposal to vent our feelings and discuss the differences and similarities in our children. I check this guest book often and rarely do I see new entries. This is our little community and we need to listen to each other and support each other. If nothing else just brag to us about your child having a good day or cry on our shoulder when it’s bad. No one can understand "us" quite like we do. As far as the "Veterans" we need to offer as much support as we can. This site is a think tank of parents who know our kids much better than the doctors. If your like me, I educate the doctors to this disease. We could help our kids by putting our heads together. Either post a message here or contact me directly. I will see it either way. We need to join forces more than just at the conference but on a daily basis. If you prefer to talk via telephone most all of us would be willing to listen and offer ideas from our own unique experience. I'm included in the network so my email and phone is available to anyone.
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June 25, 2003 - Mark - Covington, TN (USA)
A special thanks to all of those who came to our support during the last few weeks. Jacob has amazed all the doctors with his resilience and willingness to fight. Two weeks ago we were told he would not make the night but he is a fighter and a hero and he is still with us. Most doctors know so little of this disease. Don't allow them to convince you these kids aren't tough. They may lose abilities but continue to fight this disease. One day we will defeat this disease as an army conquers a battlefield. We have our wounded and victims but we have such a strong army we will not rest till the war is won. God, please help doc Susan and her staff by giving them the knowledge to fight the battle we face every day.
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April 15, 2003 - Donna - Smithton, IL (USA)
I was wondering if anyone’s child is having a lot of facial pain. Ashley is in a lot of pain. We have increased her morphine. She is also taking lorazapam and bacolfen, trihexyphindryl. If anyone is experiencing this please let me know. She is in extreme pain.
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March 25, 2003 - Mark - Covington, TN (USA)
Dianne, I hope everything works out. Our Prayers are with you.
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February 24, 2003 - Naheed - Newport Gwent, Wales (UK)
I have searched and searched for information and really need some help! My 8 year old niece has been diagnosed with Hallervorden disease after years of hassling doctors to find out what is wrong with her. The unusual thing is that it is supposed to be degenerative but some weeks there is a marked improvement in her behavior, which is almost normal apart from her speech. Her symptoms are poor coordination when walking, which means she is always falling over, she keeps her hands in fist like form and her speech is poor. There must be something someone can do to help her. She is only eight years old. It’s almost like the medical world has given up on these cases. Please please, please if there is a doctor out there anywhere in the world that can help please contact me. Or if there is anyone out there that has seen the process reverse and regenerating a healthy life any information would be gratefully appreciated.
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February 24, 2003 - Sherry - Magnolia, DE (USA)
I'm new to this disorder. It's a good speculation that my son who's 12yrs may have this disorder; I'm just in need of the all the resources that I can receive for him. Please help. Thanks.
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February 14, 2003 - Bonnie - Paragould, AR
I would just like for Mark and Jacob Wylie to know i am thinking about them and my prayers are with them. I have known Mark for some time now and want him to know my prayers are with him and his family.
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December 12, 2002 - Barry - Orpington  Kent (England)
My daughter has just been told she has HSS. She is 36 years and has 2 children and is on her own. I have had great problems finding out about the disease and what this means for the future. Very little information in the UK. Our neurologist has only come across two cases in 30 years. Please is there some one in the UK who can help please contact me if you can. Many many thanks.
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November 26, 2002 - Paula - Middleton Park Grove, Leeds (England)
Hi, Paula here again! I am just writing in response to the lady asking about the severe muscle spasms, Mikey is 8yrs old now and has had these severe spasms for the last 3 months. He has spent 4wks in hospital with them. He can spasm anything from 1 or 2 per day to continuously up to 12hrs at a time, so I do understand how hard it is to sit and watch when they are in so much pain and there’s nothing you can do. Mikey is on a mixture of 4 different drugs plus an instant relaxer called MADAZILAM, and also 2lots of pain relief and sometimes this still does not keep the spasm at bay for more than 3-4 days at a time. I think this is the hardest part of this disease for both the child and their carers. We are very lucky to have a very good pediatrician who is constantly battling against these spasms and who is also very supportive. If you want to contact me I would be very pleased to hear from you, my details are on the networking list.
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November 24, 2002 - Jesse - Lexington, NC (USA)
It's been several months since the conference, and my efforts to communicate with my new family have been dismal at best. Jenna in our hearts and minds was a gift from god, as well as our other two children. Meeting and spending time with the families was both great and at the same time crushing me inside. Finding people that knew how my wife and I felt was like a sense of comfort, seeing the efforts of everyone involved relentless fight for a cure instantly let us know we will fight it together. I really just needed to let Dr.Hayflick and staff, Patricia and everyone thanks, it by far is the hardest thing I've ever tried to come to grips with and continuing to try so...
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November 12, 2002 - Pam -Shorewood, IL (USA)
I Can't tell you how much I relate to you regarding the spasms and watching your child in pain. Kenny was severe at age 9yrs. It did help to give him meds such as Chloral Hydrate along with his other meds (Klonopin, Baclofen etc) but it may have given him relief for a few hrs but it was hard on his system, such as breathing. Finally, we had to do a Pallidotomy which for us was a miracle. One yr later we had another on the other side of the brain. 5-6 yrs later we did both sides again. Now we are using many alternatives to keep him well and off the drugs that harm his organs. We are going to an Asain body therapist who works on the internal organs and suggest health product- right now he is on lecithin for the brain and Superfood which is packed with vitamin B's. He has had many good days -- still goes into spasms for a short time each day but nothing like before. The therapy alone with the Pallidotoy and keeping him free from diseases all work together for him. It's never just one thing. Please feel free to calls us - I wish I could explain more thru this e-mail but it is very difficult. Our phone number is on the list Patty sends out. I wish you the best.  Pam
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November 11, 2002 - Carla - Covington, TN (USA)
Mark and I need some advice. Jacob is getting worse, he is now on 120mg baclofen and 8mg of valium, and he is still having spasms. Do we keep increasing his meds or do we need to considered surgery to remove the iron build-up? Can the families that have been through this please give me some insight as to which way to go? I would really appreciate it. I can not stand to see my baby hurting. Thanks, Carla
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October 6, 2002 - Fay - Thomasville, NC (USA)
My grand daughter has HSS. It has been so hard on her parents and her sister. They do everything they can for her. I am hoping and praying that a cure will be found. She is our little angel. To all the doctors and helpers, God help you. Fay
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July 9, 2002 - Alexander - Vienna, Austria
Original submission in German: hallo saskia! ich heiße alex und komme aus wien. ich habe den report im fernsehen gesehen. vielleicht hast du ja lust mir mal zu schreiben. meine adresse ist alexander.gassner@chello.at würd mich sehr freuen. hat mich sehr beeindruckt wie du mit deiner krankheit umgehst. alles liebe für die zukunft - ALEX aus wien

Translation: Hello saskia! I call Alex and come from Vienna. I have seen the report on television. Perhaps you have to write desire to me. My address is Alexander gassner@chello.at würd me very much are glad. Has impressed me very much like you with your disease handle. Everything dear for the future - ALEX from Vienna
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June 29, 2002 - Daisy - Indianapolis, IN (USA)
I had a son that passed away 10 years ago and he was diagnosed with HSS. He was only diagnosed after he passed away. I sure would like to be kept informed of any information on this disease.
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June 6, 2002 - Vicky - Cincinnati, OH (USA)
Hello HSSA Families and Friends, I enjoyed meeting all of you at the 2nd Annual HSSA Family Conference in Indianapolis last week. You are truly a group of amazing people and I admire each and everyone of you. Remember, there is strength in numbers, so stay strong and committed as we move forward. You are on my mind and in my heart in Cincinnati, Vicky
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June 5, 2002 - Gordon - Indianapolis, IN (USA)
It was a pleasure to spend time with you at the Association meeting in Indianapolis earlier this week. What a courageous and compassionate group you are. Those requesting contact from a local MetDESK associate, and/or an Attorney referral can expect to hear shortly. God Bless!
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June 4, 2002 - Renie - Louisville, KY (USA)
I am a social worker in Louisville KY working with a 12 year old that has HSS and would like to know if he should be told and when. He is bright, is having some balance problems and has learning difficulty and some emotional problems before HSS. I am seeking to talk with a family or get some feedback from anyone who I can refer the mother to, to get some support via internet. I have been told there is someone in KY with HSS, if so please email me MITSPECRKS@aol.com. Thanks so much
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June 3, 2002 - Mark - Covington, TN (USA)
Thank you so much to all those involved in making our 2^nd Reunion so special. It was so helpful for us to see old friends and make so many new ones. All of you are family to us. Please continue to stay in touch. Mark, Carla, and our hero Jacob Wylie
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May 28, 2002 - Michael - Warendorf, Germany (Nortrein- Westfalen)
Hallo alle zusammen. Bin Jugendrotkreuzleiter und möchte gerne mehr über HSS wissen. Zu wenige wissen davon, das sollte man ändern. wir starten jedes Jahr eine Großaktion wie zB. Kindersoldaten und so. Warum nicht auch mal über HSS. Bitte sendet mir Informationen zu. Würde mich freuen wenn wir mit einer Aktion euch helfen könnten. Danke im Vorraus. Translate: We want start an Aktion about HSS and I need som Information about HSS. German Youth Redcross.Thanks

Hi everybody. My name is Michael and I am the Leader of the German Youth Red Cross (JRK). Somtimes we start some Aktion to help People in the World. Our last Aktion was youth Soldiers in Country with War. And now we search for a new Aktion. On a TV- Show I saw a Massage about HSS, white a German young Girl. I never hear about this Syndrome before and so many People too. And know I want start a Aktion about HSS and I need some Information more. Please send me some Information. And all German HSS Patients too. Maybe we can contact by Letters and E-Mail. Thank You very much. Email: wkuhlm7820@aol.com
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May 24, 2002 - Antoinette - Longview, TX (USA)
My name is Tony and I have been taking care of my sister-in-law for the last 7 years. At first they said it was Parkinson’s Disease, but last year she saw a movement specialist and he properly diagnosed her as having HSS. Her name is Sheba and she has a 3 year old boy named Alex. Four months ago I had to place her in a nursing home which tore me up. I hated to do it, but my own health is bad. I couldn’t get any help from her family. Her husband, who is my brother, is in a nursing home with Huntington’s chorea. With all of this to deal with I get most of my strength from our loving creator, without him I would have no hope at all. I will certainly keep all of you in my prayers. My heart goes out to each and everyone of you.
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May 21, 2002 - Sid - Germany
The answer may be found within the landscape of the blood, so perhaps further research in "Dark Field" (blood work) will provide some answers.
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May 21, 2002 - Paul - Meinerzhagen, Germany
Original submission in German: Hi, Ich habe Saskias Schicksal im Fernsehen verfolgt, ich hoffe das es für sie Heilungschanchen gibt. Viel Glück und ein Schönes Leben Saskia. Greetz Paul
Translation: I pursued Saskias fate on television, hope gives I that it for it Heilungschanchen. Much good fortune and a pretty life Saskia.
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April 12, 2002 - Paula - Leeds, England
My son Mikey is 7 yrs old and was diagnosed with hss just over 1 yr ago. He has deteriorated quite quickly over the last year. I have 3 other children younger than Mikey that are totally unaffected. I would like any help on trying to explain Mikey's problems to my younger sons who get very upset when Mikey goes into hospital and I stay with him. I would also like to thank the people that put together the networking list; it has put me in touch with two other families in Britain.
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March 24, 2002 - Ann
It was thought there was a possibility my children had HSS then the consultant said it was unlikely. The more I have read on the condition the more I am convinced they do have this disease. Recently my oldest child has thought to have taken epileptic fits. Is this part of the condition?
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March 7, 2002 - Tracie - Lexington, NC (USA)
I am the parent of a 5 year old beautiful little girl just recently diagnosed with hss. My daughter was 9 weeks premature and from the beginning I was told to expect some developmental delays. She didn't walk until about 18 months and that was very unstable with falls constantly. She continues with the falling and has had some pretty bad ones at times. We have now been told by her neurologist that she has hss. This is coming as a total shock and I am still trying to get all the information and attempting to accept what I have read, which I will have to say has been pretty depressing. When I first began reading about all of this I became so depressed, all I could do was cry. I still cry a lot but it has helped me to feel better after reading all the different views of other families dealing with the same crisis. My only hope now is that some type of cure will be found soon. I just cannot imagine life without my little angel. We have not been given a treatment plan by her neurologist and I would greatly appreciate any recommendations in dealing with this. Anything that is going to help her live with this if not overcome it. I have a 16 month old son that has not yet been diagnosed but I do understand could possibly have the same condition. We are scheduled to go to genetics in April and I guess that will answer a lot of our questions. I am very fearful and confused but do try to remain optimistic. Any advice would be greatly appreciated and any signs of hope are warmly welcomed.
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February 8, 2002 - Chrissie - Lörrach, Germany
Hi! My cousin Saskia (18) who was diagnosed with HSS last year and I absolutely want to take part at the family conference in spring 2002. Unfortunately Saskia's condition has worsened so quickly that she cannot sit anymore. So we would have to take a first class flight to Indianapolis (from Germany!) which is simply not affordable for us. Now my question: Does anybody have experience with organizations of any kind who help to donate such a journey? Any comments are warmly welcome! Best regards, Chrissie, from the Black Forest in Germany. krueml19@yahoo.de
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December 29, 2001 - Sabrina - Marion Center, PA (USA)
Hello, My name is Sabrina and I am a private duty nurse; private duty for a special girl named Emma. She has a brother with pkan, also. She is 17 and he is 7. Emma has been unable to walk since 11. Ventilator since last year. The doctors sent her home with no hope. A year and 3 months later she is doing good. Although she does have severe episodes of spasms the only thing that helps is secanol and it has been unavailable from pharmacies from here to Pittsburgh. Our doctors say they do not know what else to do for her. Four months ago she started on B₅. Her brother did as well he does walk has never talked but his chewing is getting worse now. The parents have 7 other children. They are amazing people it is a happy home and they are part of my family now. Every month it seems Emma has horrific pain for 1 week prior to her menses the B₅ was stopped last week because someone told them it was hard on the stomach. If any one has experience with these excruciating spasms please let us know what has helped. Chloral hydrate does help but not for the most severe spasms. Your advice is greatly appreciated. I will pass this on as the family has no computer. Thank you. Sabrina. potts@yourinter.net
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December 13, 2001 - Doris - Niagara Falls, NY (USA)
Hi, I'm a 17 yr old girl from New York and I have a 10 yr old cousin who was recently diagnosed with Hallervorden-Spatz disease. I was wondering what is the onset and all the other information on it because I have been reading up on it and I've been seeing different stuff.  If someone could get back to me. You can either send me some stuff on AOLl or to my home address. Thank you, it is Much appreciated. Doris sexi1angel4life@aol.com
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November 23, 2001 - Bonnie - Brighton, TN (USA)
I was not aware of this condition until recently... I live in Tennessee and have gotten to know Jacob's dad... My prayers are with you all...
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November 2, 2001 - Beka - New York, NY (USA)
As a nurse with a chronic incurable neurological disease I find that there are common issues among those of us who face chronic disease. Regardless of age, much has to deal with loss and grief. There is an excellent book called I'M MOVING TWO which may of benefit to those suffering from HSS as it deals with many of the daily issues one faces with  a lifelong disease. There is also a readable children's guide available thru www.care4dystonia.org. We hope that you consider notifying your members of this literary piece that has had positive book reviews from many. We also urge that you consider placing Care4Dystonia on your linkage page for your members. We would do so as well. We look forward to a positive response.
C4D  www.care4dystonia.org
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September 25, 2001 - Peggy - Charlotte, NC (USA)
My daughter Christy has just started on Vit. B₅ on a dosage of 545 mg. If you are using this would you please share the dosage and results you have had.  We have another appointment in October and your information could be of help to us and our physician. Thanks, Peggy
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August 20, 2001 - Mary - Grand Rapids, MI (USA)
Dr. Hayflick, What can be said except.... THANK YOU!!!!!!!!!! We are forever grateful. The Wagners
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August 19, 2001 - Terri - Tucson, AZ (USA)
Never underestimate the impact these special children have on people. We were at a family reunion in Ohio this past July and there was a young couple there that I didn't have the chance to meet but they did notice my son, Andy, who was there in his wheelchair. Andy is 10 years old. He was diagnosed 4 years ago with PKAN. Three weeks after we got back from our trip we received a letter from the couple. They explained in their letter that they were getting married Aug. 25th and wanted to do something special for Andy. They decided to put little cards on the tables at the reception that tell about Andy and PKAN. They are taking donations. Along with the letter they also included a check for $200. We are sending both donations on to Patty. Bryan and Tonya (soon to be) Mullet are a special couple whom I wish I had the pleasure of meeting. God is always there even when we don't feel His presence. My deepest thanks to Bryan and Tonya. Terri for Andy
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August 13, 2001 - Chrissie - Lörrach, Germany
Hi everybody! I'm so glad I finally found this homepage as in Germany I could not discover any organization for HSS. My cousin was recently diagnosed with HSS, she is 17 years old. Does somebody know an organization in Germany where we could get some answers and help? The doctors here are at quite a loss. THANK YOU SO MUCH FOR THIS GREAT SITE! Chrissie krueml19@yahoo.de
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July 31, 2001 -Marisol - Dorchester, MA (USA)
I want to thank you for sending me the newsletter with the information of the new discovery.  Although my daughter has not been diagnosed with HSS, or should I say PKAN, I keep going over and over the symptoms and it sounds exactly what she's going through. I had an appointment yesterday with her neurologist and gave him the newsletter to read, they said it was great news and now they are going to redo the blood work.  Tomorrow, 8/1/01, I have an appointment with the metabolic specialist and share the information with him also. On another note, if anyone is willing to share with me the process of how HSS has been on your child, I would really appreciate it. Thanks again, Sincerely, Marisol oceanandsunpr@aol.com
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July 30, 2001 - Carla - Covington, TN (USA)
My son Jacob is in the early stages of HSS. I am praying that they can find something soon, so my son can walk again, maybe even run. It hurts so bad sometimes to remember him following me around outside when he was younger. I am so thankful that the gene was found and now we pray for a speedy answer to our prayers, a cure. God Bless you all. Carla
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July 27, 2001 - Melissa - Crystal River, FL (USA)
Hi, I just got the news in the mail, I cried tears of joy. At least I have hope for the future. Maybe one day I'll be able walk or even dance again. Thanks to everyone who worked so hard to make this happen. I've prayed every day for your success in isolating the gene. Tell Dr. Jane I'm ready to be a "guinea pig" when they're ready with a treatment. Love To All, Melissa Moore
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July 26, 2001 - Amy - Groesbeck, TX (USA)
I am Stevi Rae Fuller's sister.  I think you all are doing great! Keep up the good work!
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July 25, 2001 -Pam - Shorewood, IL (USA)
THANK YOU, THANK YOU, THANK YOU, To Dr. Hayflick & Dr. Gitschier for all your devotion to our HSS family - Thank you to Patty and all the people who did a wonderful job to raise funds and make it possible for this new discovery.  Our son will be l5 yrs. old in Oct. and we now feel there is hope. Ken is still well and for the first time I see him whole - even if he never walks or talks - just to know that this disease may be kept from progressing and the pain eliminated, would be wonderful. Good Luck to all and God Bless.
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July 25, 2001 - Mark - Covington, TN (USA)
Bravo Dr Hayflick.  You are our new hero. you have given us hope where there was none.
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July 24, 2001 - Terri - El Cajon, CA (USA)
HOORAY FOR TODAY! Finally, not just a baby step forward it's a giant leap. The same thing my heart did when I first learned of the news, after confirming my ears really heard what I thought I heard, I then started to cry.  Crying for joy, for thankfulness, for gratitude to the researchers, for miracles, for hope and this particular day crying for discovery. Going back to the beginning with Kimbi, my step-daughter, it seemed every bit of news was worse than the last. As it all unraveled the more I learned the more my heart sunk.  I can still recall the sadness I felt for her when I was in Minnesota and heard the news from Patty at Mayo Clinic. The first time I saw her after the suggestion of HSS and all it entailed tore me up so much I could not find words to express my sorrow. All I could do is cry. And now this - more than I would have expected although I always held out hope but didn't know how soon our prayers would be answered. The first positive in so many years.  I can not think about how truly wonderful this is, let alone talk about it, without getting misty eyed. I am so overwhelmed with happiness I am
continuously bursting into tears. It seems too good to be true. How can I even think about repaying these people for their interest, time, and diligence, giving us hope beyond belief. Hope for a cure. What an incredible word, cure. One that is seldom used in our home. And now after this it is one that will be within our grasp. We are now very enthusiastic, looking forward toward the future. Making plans for her like we have never made before. Just the thought of Kimbi & her dad, Chris having some of the every day activities he enjoys with our other 3 kids would please me more than anything.  She is the light of his life, his angel, his princess. Oh Happy Day, we have so much to celebrate!! Thanks to all!   Lots of Love, Terri
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July 14, 2001 - Nate - Chisago City, MN (USA)
Hey, this is Nate again. Sorry it has taken so long for me to get back to you. We have had a very busy summer, but I thought you would like an update on my sister. Plus the web page of Mannatech {mannatech.com} and the science that is behind it is at www.glycoscience.com. Anyways, I have been working with Heidi everyday now on therapy. We have seen huge leaps and bounds. But these last two weeks her balance has been funny, so she has fallen a few times. but the big thing is that she is out of the wheelchair and is gaining back her mobility. Nate
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July 10, 2001 - Theresa - MA (USA)
I am an OT who recently started working with a boy with HSS. Although I have some ideas for treatment, I would love to chat with other OTs who have worked with people who have HSS. Please email me TBDARSCH@aol.com.
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July 2, 2001 - Beky - Moorpark, CA (USA)
Much love to all of you HSS families.  After taking a look at all the family pages, I am humbled and inspired.  I know the Tracie and April Flinn because for the last three or four years, I have volunteered at a Wheelchair Sports Camp they attend.  It is one of the highlights of my year!  I pray that more people would be aware of HSS.  To those of you working so hard to raise money and awareness, keep it up! Love and prayers, Beky
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June 25, 2001 - Pamela - Shorewood, IL (USA)
Dear Nate, I have a l4 yr old son with HSS and would like to know a little about the product you mentioned your sister took, Mannatech. I have never heard of this and would like more info if you could e-mail to me. Thank you, Pam.
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April 14, 2001 - Mary - Grand Rapids, MI (USA)
John from Tucson, Arizona. We also have a 9 year old boy with HSS. We would love to e-mail you. Please let us know if that is possible. Thanks!! Joe and Mary Wagner m.b.wagner@att.net
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March 24, 2001 - Marisol - Dorchester, MA (USA)
I have a 19 yr. old daughter who, for the past 4 years, has been regressing, unable to keep her balance, not chewing correctly, very stiff, using one word, etc. She is being treated at the New England Medical Center in Boston, MA. The doctors there have done all types of tests and cannot figure out what is wrong with her. Yesterday, one doctor mentioned Hallervorden-Spatz Disease but said that they don't think it is but he wanted to mention it to me in case I want to read up on it (note that he said that the policy is not to mentioned anything until they are sure but he still wanted me to know). After reading your web page and the stories of the other children, it sounds so much like my daughter. I Would love to hear more about this.  My e-mail is oceanandsunpr@aol.com if anyone wishes to give me further information on how I can find out if this is what my daughter has. Thank you so much.
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March 23, 2001 - Vickie - Mt. Moriah (Canada)
I have just visited your site but have not finished it yet but I find it very informative and interesting. I am a Home Support Worker here in Newfoundland, Canada and work with a young girl of the age 14, named Kristina who has HSS. She is a very happy young girl and tries to let nothing bother her. She is a great young girl. So, I will be back to visit this site again very soon. Vickie in Newfoundland.
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March 20, 2001 - Emily
I simply wanted to say that the stories here are truly moving. I pray that God will allow research for HSS to be very effective.
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March 3, 2001 - Nate - Chisago City, MN (USA)
Hi this is my first time visiting the web page. I have an older sister who has HSS. She was diagnosed at the age of 13 and was put in a wheelchair at the age of 16. She remained in the wheelchair for about six years. When we discovered a Miracle. It is called Mannatech, and it has done wonders. She is out of the wheelchair and has her motor, speech, and hand-eye coordination back. We only use the wheel chair for long trips and outings. The doctors said she wouldn't probably make it after 22. With this product she has lived to the age of 27. Please e-mail me for more info at nateb15_99@yahoo.com
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February 8, 2001 - Mark - Covington, TN (USA)
To John from Tucson.  Thanks for the note John. I'd like to know a little more about Andy and how's he doing. You are welcome to email me. wycoyte@aol.com Mark
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January 28, 2001 - Paula - Perth, WA (USA)
Hello, my name is Paula and I have a child with cardio-facio-cutaneous syndrome. I enjoyed your letters and even though our kids experience different syndromes, I'm sure some of the comments I read will give me lots of knowledge to pass on at my parents group. Many syndromes go unnoticed and I'm sure this is a good way of making people see and understand our many concerns. Good luck to you all.
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January 13, 2001 - John - Tucson, AZ (USA)
To Mark from Covington, TN,  I read the feature about your son Jacob, and wanted you to know that you and Jacob are in our prayers. Our son Andy is 9 years old and also has HSS. As with Jacob, Andy's motor skills continue to decline. Wanted you to know that, as a father who will never be able to watch his son play baseball, or drive a car, I truly understand your sorrow and unconditional love for Jacob. My wife and I thank God everyday for sending Andy to us, even if it is for a short time. We will continue to pray that God gives you and your family strength to carry on. God Bless. John, Tucson, AZ
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December 26, 2000 - Mark - Covington, TN (USA)
I want to thank all of our extended family for all the Christmas cards and thoughts around this season.  I also want to thank Patty for featuring our son Jacob in your last newsletter.  It meant so much to so many who love Jacob. His motor skills have declined to the point that we are going to have to modify his computer.  Please remember us in your prayers as we do you.  Mark
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December 13, 2000 - Julie - Grand Rapids, MI (USA)
I'm so glad that this page is here. Last week my family found out that my cousin has HSS. I've never heard of it before and thanks to this page I can understand it more. I just hope that a cure is found soon.
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October 27, 2000 - Sara - Channahon, IL (USA)
I am doing an information speech on this disease and am personally involved with a teen boy with HSS. I am wondering if anyone else has tried hyper baric oxygen treatments or magnets to help with symptoms.  I know this young boy received hyper baric oxygen treatments and has improved noticeably.
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August 6, 2000 - Cheryl - Rensselaer, NY (USA)
Thank you for this informative web page, especially family stories were interesting. It is always comforting to know that some one else is experiencing the same problems you are. We always think we are alone and that no one could possibly understand. I have 3 adult children with HSS and we have known this for about 5 years but no one really offered any help or support. I am interested in more information about nutritional supplements and vitamins that might be helpful and I like knowing that I am not alone. I will be a frequent visitor and be anxious for new information.
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June 12, 2000 - Belinda - Ft. Myers, FL (USA)
Thanks for this informative site.  My daughter was just diagnosed last week, and it is good to have a place to go for resources.
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May 24, 2000 - Victoria - Loveland, OH (USA)
Dear Patty,
I often come to your web site to read the guest book.  You have helped so many people and given them hope and guidance. You can tell some of them are so happy to find a place to get information and talk to others who understand what they are going through.  I am so proud of you. You have done such a wonderful job here.  I hope the conference was a success and met all your expectations. I wish I could of been there to be a part of it.  I hope you will do some type of letter and let everyone know some of the details of your trip.  I thought about you and Kimberly and Diane every day wishing I was there.  I really admire your accomplishments and all you have done for the HSSA organization.  You are without a doubt one of the people I admire most in this world.  Love, Vicky
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May 2, 2000 - Freddi - Virginia Beach, VA (USA)
My daughter was found to have HSS after she passed away at the age of 34. Now, I find my 15 year old grandson has HSS. We have not told him about his illness, but I do plan to bring him to the conference in Washington, DC (Bethesda).
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April 12, 2000 - Lynne - Sumter, SC (USA)
My neighbor is a 43 year old Caucasian former RN with HSS and possibly Parkinson's.  Can you offer any advice on possible clinical trials?  Thanks.
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April 8, 2000 - Dianna - Clinton, IA (USA)
I am a "Support Staff" for a young woman with HSS. In the 2 years that I have known her, her condition has deteriorated greatly. She can no longer walk, talk, eat, or control other bodily  functions.  However, she still has a wonderful sense of humor, and enjoys many activities which others her age would. Your web site has been extremely informational to me. I am looking forward to the information which her parents expect to gather from their attendance at your first family conference. I pray that there will be some treatment which will stop the progression of this relentless disease, and save the life of my young friend. She is a remarkable young woman who has been tragically struck down by this condition. My thoughts and prayers are with all of the families effected by Hallervorden-Spatz Syndrome.
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February 21, 2000 - D.- Combined Locks, WI (USA)
My 20 year old son was diagnosed with hss about 9 years ago, at Mayo clinic, after many years of searching for the cause of his deterioration. My son toe walked with a staggered gate until about age 15 (the last year with the use of a walker), he has since been wheelchair bound. The last few years his body and muscles have been deteriorating more rapidly. Nothing gets him down, he is always a happy go luck guy! I was happy to find this site to find out more information about this rare disease.
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February 9, 2000 - Kirk - Northridge, CA (USA)
In regards to Assistive Technology, contact me at the Center on Disabilities/CSUN (818) 677-2578 or kirk.behnke@Csun.edu
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January 26, 2000 - Jason - Auburn, IL (USA)
To Stephen from Decatur, IL. I am also from Decatur and had a brother with hallevorden-spatz. Please e-mail me at mrcamus.aol.com.
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January 16, 2000 - Mark - Covington, TN (USA)
My son Jacob has recently been diagnosed with hss. He is 5 years old. He has never walked correctly and can only say a couple of words that are understandable. We are still in the "shock" stage. Any help or advise anyone can give please respond.  wycoyte@aol.com
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January 10, 2000 - Krysti - Leesburg, VA (USA)
Thank you for your very informative web site.  I have been trying for 5 years to obtain information about HSS and with HSS being so rare, information was hard to come by. Great Web Site!!!
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December 17, 1999 - Peter - Granada Hills, CA (USA)
The Flynn Girls ROCK!!!!! Thank you for providing information on this rare disease to the people who have no clue that it exists.
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November 19, 1999 - Stephen - Decatur, IL (USA)
I am glad to see that there is now support out there for people that have a family member(s) with HSS, because there wasn't really one for my family.
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October 6, 1999 - Kristopher - Terre Haute, IN (USA)
22 years old, diagnosed in 1990. No support in Indiana! Please contact us, toll free 888-988-2202 if not there leave message.
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October 1, 1999 - Kirk - Winnetka, CA (USA)
Thank you for providing such an excellent resource for consumers, parents and health care professionals. I work with Assistive Technology so if anyone should need any help or guidance, please let me know.
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August 29, 1999 - Elizabeth - Shelby, NC (USA)
I am an RN in a long-term care facility. I work with 2 boys ages 25 and 30 with this diagnosis. I am happy to find this site. I exchanged emails and info with the Draheim family about a year ago. I recently found him again, and this site! Blessings to you all.
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July 13, 1999 - Rob - Ft. Myers, FL (USA)
The other day I was told that my cousin was diagnosed with HSS and I wanted to know all that I could. This web site has not only been resourceful but it was also interesting and uplifting. Thank you HSSA
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June 14, 1999 - Mary -  Lake Arrowhead, CA (USA)
My mom called me and told me about your Web site. I went to church as a child with Debbie, mother of April and Tracie Flinn, who are pictured on your family page. Well done Web site!
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April 27, 1999 - Katie - Stanley, NY (USA)
I am doing this report on this disease. I need help. What kind of people have this disorder? How do you get the disease? How many people get it? Is screening done? Write back.
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April 22, 1999 - Sheila - Buena Vista, TN (USA)
This is truly a blessing to see. I have a nephew who's been diagnosed with HS and have been looking everywhere for information on it. Thanks to you I've found a great site to help our family. Thanks again it's great.
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April 14, 1999 - Trudy - San Diego, CA (USA)
Thank goodness for folks like Patty and Davida for making all this information available to both the lay and professional communities!  A job well done.  I will be back often to visit this site, that's for sure.  I especially liked the "Ask the Doctor" feature you have included in this web site.  Keep up the good work and again, "Thank you".
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