In memory of a very special girl our daughter, Alyssa Barbiero

By Gerry and Bela Barbiero

Alyssa had a special gift. Though only 8 years old, she not only had the ability to deal with her disorder, she had the strength to comfort everyone around her. She was our rock when her big sister passed away in March. She knew exactly when we needed a hug or a kiss, which she showered generously upon us. This past December, we lost her to NBIA. She was our baby girl. 

Alyssa was born in Montreal and grew up in a multi-cultural household. Even so, she was adamant about language in the stubborn way she could sometimes be: she only wanted to learn English. She ignored all the other languages spoken around her. 

When she was 2, we moved to upstate New York where she attended Clover Patch Preschool. She went on to Rosendale and Birchwood Elementary schools in Niskayuna. In kindergarten, she made some very special friends, friends she would keep for life. 

In 2003, she took part in the Make-a-Wish program and said she wanted a dog. This was the happiest event of her life. She picked a puppy from a litter of five black labradors and chose her pet’s name all by herself: Emmy. They were inseparable. Alyssa let everyone know that Emmy was her dog. 

Today, it is this affectionate dog that comforts us. Thank you, Alyssa, for this parting gift. 

There are so many other people we also want to thank. First and foremost, we are so grateful to our parents, brothers and sister-in-law for all their love and support. We also thank our neighbors who make us feel like family and the staff, parents and students at Rosendale and Birchwood. They always made Alyssa feel comfortable.                        

To all of Alyssa’s instructional aides and teachers, we know she had the best, and we thank you. Your determination and dedication made her love going to school. 

Thanks to all of Alyssa’s bus drivers and aides who made her rides to school fun. And thanks to the Niskayuna School District for taking care of all of her needs. 

Special thanks to Pat Sweeney, Deidra McGuire, Laura Lape, Ali Lerner-Doyle, Megan Adams and the Michalisins for taking care of Alyssa and bringing her so much joy. Heartfelt thanks to Holly Lape, who was a very special person to Alyssa and remains the foundation of our family. Holly has stood by us through thick and thin and is our guardian angel. 

To Niskayuna residents, our wonderful community, which continues to help us through this very difficult time, we appreciate you so much. To all of our friends, you know who you are, thank you for helping us. 

Last, but not least, thanks to Brian Alyward and Mark Michalisin who brought out Alyssa’s true character in their touching eulogies. No words can express our gratitude to you. The smile you would bring to Alyssa’s face told us she was a very lucky girl to have known you—and all who touched her during her all-too-brief time with us. 

Alyssa’s passing has left a large hole in our lives that will never be filled. But she will live forever in our hearts. Thanks, Alyssa, for bringing joy and strength into our lives and teaching us the true meaning of life. We were truly blessed to have you as our daughter. We will never stop missing you! 

All our love Mom, Dad and Emmy

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The birth of our precious daughter, Sabrina, was one of the greatest moments of our lives.  This March we lost her to NBIA.  By the time she died at age 9, she had endured much more than the average child, yet her classmates remember her as someone who always smiled and always looked on the bright side, even when she was in pain.

Sabrina was a trouper. Though her time with us was all too short, she still managed to give us tremendous joy and to teach us so much. She taught us what love was all about, and she showed us how precious life is.

Born in Montreal, Canada, Sabrina enjoyed watching hockey at a young age with her dad. Every Saturday night, she and her dad had a date to watch the Montreal Canadians play.

Our family moved to upstate New York when Sabrina was 3. She attended Clover Patch Preschool and moved on to Rosendale Elementary School. In kindergarten, she made a group of special friends who treated her like one of the gang. One of their biggest thrills was to push Sabrina around the school in her stroller/wheelchair.

Sabrina was always a flirt and a busybody, and tended to attract attention. Her glorious curls and big brown eyes didn't hurt, either. She never let her disability get in the way of making friends. She touched many lives.

As we try to cope with losing Sabrina, we want to thank, first and foremost, our parents, brothers and sister-in-law for all their love and support. Thanks also to all of our neighbors, who make us feel like family.

We are also grateful to the staff, parents and students at Rosendale and Birchwood Elementary schools for all they did to honor Sabrina's memory. Thanks to Sabrina's instructional aides. Their dedication was a big reason Sabrina loved school. Thanks also to Niskayuna School District for providing for all her needs.

Special thanks to Brian Alyward for his moral support and for making Sabrina laugh; to the bus drivers and aides who made her rides to school fun; and to our wonderful community who continue to help us through this very difficult time.

We are especially grateful for the kind words that Brian Alyward, Linda Cross and Taylor Tear spoke at the services for Sabrina. Last but not least, thanks to all our extended family and friends for their emotional support.

Sabrina was a lucky girl to have known all of you.

She leaves a large hole in our lives that will never be filled. But she will live forever in our hearts. Her family -- Mom, Dad, her sister, Alyssa, and her dog, Emmy--miss her dearly but will cherish her memory always.

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Bruce had "something special" besides his red hair and smiling brown eyes. He enjoyed life - bowling, watching football and driving his car. He graduated from Columbia High School in 1998 and attended Hudson Valley Community College. 

He enjoyed going to work every day and earning money. The last five years of his life, he was a mail clerk in the State Education Building in Albany, next to the Capitol. He was happy and always positive and made lots of friends. 

I was touched by the cards I received after his passing. One in particular sums up that "special something" Bruce had. It said: 

"I work at the New York State Education Dept. I did not work with Bruce, so I did not know him well. But I would sometimes see him walking down the hall where my office is. I started saying hello and having conversations. I was so taken with him the first time I noticed him because he walked down the hall with such determination and strength and purpose and often with a smile, even though his body was not cooperating. I thought this is a special person worth knowing. And so we began our conversations. And he was a special person, I discovered. 

I did not know what Bruce's disability was until I read the sad, terribly upsetting news in the newspaper. Still, I had never heard of NBIA until then. I have now read up on it and can only begin to imagine the challenges Bruce had to overcome, every day, and what it must have been like for you. 

I want you to know that Bruce inspired me every time I saw him. And knowing what I now know, I realize he was an example of courage to me, in the (not so simple) acts of just getting to work in the morning and walking down the hall. I will miss him very much, but I will always remember him. I hope you can find some comfort in knowing that he mattered to people like me who you may not even know." 

This touches me so much. Bruce was special and left a mark on each person he met. He never complained about his disability and lived his life to the fullest. We continue to miss you Bruce, every day! 

Love, 

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In Memory Of
Rachel Bennett - Lancashire, United Kingdom
August 27, 1967 - September 8, 2008

“Rachel was an adorable person with big brown eyes and a sparkling personality who, despite her many difficulties, had an amazing ability to bounce back and carry on smiling.”

Mum & Dad

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In Memory Of
Andy Byler - Tucson, Arizona
July 26, 1991 – November 16, 2003

Some people come into our lives and quickly go, others stay for a while and leave footprints on our hearts and we are never, ever the same.

Andy loved going to school. He attended Quail Run Elementary where Mrs. Holt, Myrna and Teresa were his teachers, and Katie was his girlfriend. He rode bus 106. Jim and Hal, the bus driver and attendant, were his surrogate grandpas. Hal called Andy “Hollywood.”

Chris Gran was Andy’s caregiver. She also was his friend, and will always be considered part of our family.

His nickname at home was “Rooney.” His favorite toys were his penguin he named Martin, and bunny rabbit. He loved the Disney channel, music, animals and the color green. I always said that if he could pick a career, he would work at Sea World with the dolphins or penguins. In 2002, Make-a-Wish fulfilled his dream of petting a penguin with a trip to Orlando, Florida. It was an awesome week and we will always treasure the memories.

Andy was not only our son but also our teacher and our best friend. He touched many people in his short life. He had an infectious smile and a personality to match. He taught us unconditional love and what truly matters in life. From him we learned this: Don’t take the time you have with your children for granted. Don’t pass up the chance to hold them, to tell them you love them. Make the most of every second.

Andy left a huge hole that will never be filled. But he forever changed our lives in just the short time he was with us. Thank you, Andy.

Love,
Mom, Dad and Christine

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Rebecca Deters, at age 22

Through our tears, we remember Rebecca’s smile. She loved to spend time with her friends, family and dog, Suzie. She always had a hug for everyone. She also loved a thrill. She participated in the Bix 7, a 7 mile walk/run marathon, and once rode her bike on trails with her father in an annual event called Ride the River. When she was 15, she had the ultimate thrill of driving her mother’s car alone—without a license or any prior experience. We couldn’t believe it when we caught a glimpse of her behind the wheel, navigating a narrow street with a big smile on her face.

Rebecca was born Dec. 20, 1977, in Davenport, Iowa. She was active despite having HSS and graduated from Davenport North High School in June, 1996. But HSS also cut her life short.

Rebecca was hospitalized last May with pneumonia and fought respiratory problems from that time on. She was hospitalized three more times, and each time her condition worsened with additional complications. Rebecca lost the battle on Oct. 23, 2000, when she died of pneumonia and sepsis with respiratory failure.

Remembering Rebecca’s smile will always warm our hearts, and those who loved her will always be inspired by the courage with which she reached out to hold the hands of angels. We know this disease is so different in everyone but we have found that, as parents, we all share the feeling that these children are all special “angels.” They are sent to us to love unconditionally forever.

We are grateful to those who helped up through the rough spots, especially Rebecca’s respite caregiver, Diane Hamm. She gave such loving care to Rebecca we came to consider her as part of our family.

The past months have been filled with emptiness and a lot of tearful anger. But as Rebecca’s family—her parents, sister, Jennifer, and brother, Shawn—we know we will be reunited together some day. When that time comes, Rebecca will be able to speak to us, hold our hands and walk again with us together in a pain-free heaven.

James and Sharon Deters family

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A friend recalls what it was like to know Emilia Draheim, who lived with PKAN

When I think of Emilia, my mind paints a picture of a happy young woman. Even though her world was physically small, she seemed to take such joy in every part of it, as though she were a world traveler going on a grand adventure. It is very humbling to me to be shown happiness by a person who suffered as much as Emilia did in her life.

She also had a special sensitivity to other people’s pain. I was greatly impressed by the way she would empathize with people’s suffering while watching the news with her on television. I think she was somehow connected to other people’s suffering, which she could understand through their voices.

When I think of Emilia, I see a beautiful young woman who transcended illness and physical confinement with happiness and sympathy for others. Our pain at losing her is so very deep and hard to bear. Yet, I am grateful for the opportunity to have known someone as brave and special as Emilia.

Alex, friend of ‘Emily’

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In Memory Of
Madison Bailee Frederick - West Liberty, Kentucky
September 22, 1999 - May 18, 2008

When Madison Bailee Frederick was born nine years ago in Lexington, Ky., she was a beautiful baby, and her Grandpa proclaimed her the first pretty baby he had ever seen. She was our "puddin' girl" and we were proud to be her parents. 

Madison hit all of her milestones on time, from holding her head up to crawling. It wasn’t until she was 15 months old and still not walking that her doctors sent her to First Steps, a therapy program for children younger than 3. Madison finally began to walk just before turning 2, but she lost that ability at age 5.

As Madison’s condition worsened, her occupational therapist encouraged us to take her to Cincinnati Children’s Hospital. It was there in 2004 she was diagnosed with NBIA. Over the next four years we went to countless therapy sessions, chiropractic sessions and massage therapy — anything that we thought might help our baby girl. We loved her without limits and took her on as many trips and adventures as we could. 

Madison loved nothing more than amusement parks rides, so we took her every year. She also loved to go to school and see her many friends. Along the way, she made a best friend, Sheila Hampton, who loved Madison like family. She would stay for sleepovers, play with her at school and sometimes just sit and simply hold her hand. 

Her sister Christin also was a big help. She played with Madison all of the time, even up until the end. On March 1, the Make- A -Wish Foundation granted Madison's wish of going to Disney World. We all had a wonderful time, and that proved to be Madison's last good week. Madison left this world on May 18, lying on her Mom's chest. 

Through all the stitches, spinal taps, MRI's, CT scans, therapy, DBS surgery and an unknown infection in 2007, Madison stayed strong and actually helped to comfort all of us. She would say, "I'm okay Mommy." Chris and I always said she was the strongest child we knew. She had an infectious smile and was always smiling. Now we have a giant hole in our lives since Madison passed away. On her headstone, we will have:

Her Parents' "Puddin"
Her Grandparents' "Love"
Everyone's "Turkey"

"Turkey" was the nickname given to her by her friends in the first grade. Madison didn't get to finish the third grade at Morgan Central Elementary School, but we know that her wonderful aide Ms. Trish took great care of her for those three years. 

We are so grateful to Madison's many doctors, therapists, extended family and dear friends who truly eased her journey.

Those we hold in our arms for a little while, we hold in our hearts forever. We love and miss her greatly. Until we meet again…

Chris, Michelle & Christin Frederick
and her grandparents, aunts, uncles, cousins and friends

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Brent was a very loving and happy little guy. We are heartbroken that he has left us. We know his pain and suffering are over and that he is with God, but our hearts will ache forever. His Papa Jordan said it best: “Brent never said a bad word about anyone, Brent never did anything mean or hurtful to anyone. He always had a twinkle in his eye and a  smile on his face.” Brent was indeed an angel, and he touched everyone’s heart. He will be forever missed by those who loved him. 

A Parent’s Love

We didn’t have to look into your eyes to fall in love with you. We didn’t have to hear your cry to know you loved us too. We didn’t need to hold your hand to cherish you always. You touched our souls. You sweetened our spirits. You gave us memories we’ll always hold dear. Yes, our hearts ache because you departed us too soon, but a parent’s love does not end with death, for you are our child, and our love forever is yours. 

Melinda & Mike Fry
Papa & Mema Jordan

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We say good bye to Stevi Rae Fuller 

Stevi Fuller was born Oct. 9, 1989, full of love and smiles and a fight to live life to its fullest. Through the years she brought us together in ways we had never known. We got past ourselves and into her world. 

When she was 1, we knew something was wrong because of delayed development in her speech and walking. Years of going to the doctors and being tested still showed nothing except frustration. Through it all, she showed us more love than we had ever known. 

Finally, in May 1999, she was diagnosed with HSS, now NBIA, and lost her ability to swallow and had to have a gastric tube placed. Her life would never be the same. Stress and dystonia went wild in her body. 

 In 2000, she bit off one-third of her tongue and got pneumonia. The doctors prepared us for her death, but God graced us with six more years. In 2001 she had deep brain stimulation, which helped her regain some of her ability to function. 

She taught us lessons of going through trials and tribulations with peace in our hearts. She taught us endurance, perseverance and courage. Taking care of Stevi was the most challenging thing our family has ever done, but we received the greatest rewards!  Sacrifice was the key.

She died May 22, 2006, from pneumonia and we gave her a Celebration of Life Party.  A poem was written and read by her physical therapist and at the end of the service, we released helium balloons and live butterflies. We will forever remember the lessons of life taught by our precious little girl — to love unconditionally and worship the Lord always. 

The Sound of Flutter 

One day as she was lying there

She heard a flutter in the air.

She listened close as it passed by.

She knew it was a butterfly.

And then, again, she heard the sound.

Her butterflies were all around!

They danced in colored harmony.

Oh what a sight for her to see!

With wondrous eyes she watched them fly

And touched their wings as they flew by

She giggled with a joyful glee

And said to them, “Please wait for me!”

Then in the midst of colored wings

She heard the angels start to sing

To her delight, the Son of Man

Reached out to take her tiny hand.

He gently placed her on His knee

She smiled, with curiosity.

Then He revealed what she had known

The time had come to take her home

“You’ve taught the lessons asked of you

And great rewards are now your due.”

The sound of flutter filled the air

Then she saw Mama crying there

She looked at Jesus with a tear

“Just talk to her, child, she will hear.”

“Oh precious Mama, hear my voice,

And know you were the bestest choice

For Mama I want you to see

That God chose you to care for me.

He knew that you would be the best

And Mama, you have passed the test.

And Daddy, how I loved to hear

Your gentle whispers in my ear

And sweetest Daddy, don’t you cry,

I’m with our Father in the sky.

The lessons that I learned from you

Compassion and a heart that’s true.

And patience you have really shown

A lack of love, I’ve never known.

Then Jesus took her by the hand

And said, “Sweet servant, understand

I only choose my strongest saints,

The ones that I know will not faint,

To show my children here on earth

That their possessions have no worth

Through all your pain and suffering

Faith, Hope and Love… Your offering.”

Then Stevi knew her job was done

And bowed before the Holy One

“Your family will join you one day,

But for now Stevi, let’s go play.”

“So cry for me, but not for long.

For in my heart I have a song

I’m dancing high up in the skies

And chasing all my butterflies.”

(written especially for my precious little friend, Stevi Fuller, by Haila Mahan 5/23/06)

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Gone from our sight, but never from our memories,
Gone from our touch, but never our hearts...
 

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A mother remembers a son she recently lost

What can I say about Austin except this...

In his short 14 years he taught me more about love and loving than I think I would have learned in a lifetime without him. A gift, a treasure and a teacher — that was Austin. Suffering with grace and dignity always, smiling through pain, and moaning only when pain was intolerable. His was a pain of extraordinary circumstance: a broken bone, a dislocation, and unimaginable dystonia that traveled throughout his body, changing location from month-to-month. Yet through it all, Austin shared with us his most valuable gifts: He taught us that love means holding on, love means letting go, love means staying together through thick and thin...all communicated through the blink of an eye and a luminous smile. 

I miss him so,
Dianne Gray
 

Commissioners proclaim Austin Gray Day in Florida county

In memory of a youth in the community who had NBIA, the Board of Commissioners in Collier County, Florida, proclaimed July 6 as "Austin Gray Day." 

To mark the day, the county's Parks and Recreation Department hosted a barbeque, water day, bounce house, memorial service and tree planting at Sugden Regional Park to honor Austin’s memory. Officials called Austin an inspiration to all, and specifically, the inspiration behind the Special Needs Recreation Program of Collier County. 

His mother, Dianne Gray, a former member of the NBIA Disorders Association board, helped start the county’s summer camp for kids with special needs, which Austin attended. Dianne Gray also spearheaded other special needs activities in the county.

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Sharon Denise Haugen - Richardson, Texas

October 24, 1963 - October 17, 2004

Sharon Denise Haugen of Richardson, Texas fulfilled God's purpose in her life as she taught us about His love. As Sharon courageously battled NBIA she showed us that "Love patiently accepts all things. It always trusts, always hopes and always remains strong…. So these three things continue forever: faith, hope and love. And the greatest of these is love." Sharon taught us about God's love throughout her life and we will forever love and miss her.

She was born to Nancy and William Haugen on Oct. 24, 1963. She was the fifth of six children and though she experienced developmental challenges during her life, she was the glue that held the family together.

From our earliest memories, Sharon loved to sing. She had difficulty learning to read, but she could memorize the words of a song after hearing it once or twice. She loved Neil Diamond most. She knew every one of his songs and attended more than a dozen of his concerts. She also enjoyed Kenny Rogers, Barbara Mandrell, the Oak Ridge Boys and Elvis.

Sharon was also an athlete. She competed in Special Olympics for many years and traveled across Texas to compete. She took home numerous trophies and ribbons. Sharon also loved to dance. Her Dad was a DJ at many events, and often took Sharon with him. She'd dance and sing the entire time, never growing tired.

Sharon was a beloved aunt to five nieces and three nephews. She nurtured them and loved them as if they were her own. She will be remembered as the most special aunt of all. Her oldest niece, Jenifer, remembers Sharon as being the best playmate in the world. Aunt Sharon always made her laugh and smile, even when she wasn't feeling well.

Sharon was always physically fit, strong, and in good health. The disease that took her life on Oct. 17 was something she always had but wasn't diagnosed with until two years ago. We won't ever forget her big heart, contagious laugh and unconditional love.

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In Memory Of
Aubrey Danielle Lockard - Indiana
November 7, 1997 - March 20, 2009

Hello NBIA family,

With a heavy heart I notify you that we lost our daughter, Aubrey, to septic pneumonia and respiratory failure on March 20. Aubrey was a special soul lent to us by God for a short time, but she left lasting impressions on everyone she touched in her 11 years.

Aubrey was a courageous child who got right back up whenever she fell and kept going full steam. From the moment she was born we knew she was touched by God. She was our angel on earth.

Although Aubrey was taught at home, she was adopted by her fourth-grade peers and counted many friends among them. They visited with her weekly for lunch, reading to her and entertaining her. Her teachers and peers went out of their way to keep Aubrey connected and brought tremendous joy to her life.

Aubrey enjoyed watching Blues Clues, spending time with her "Pa" and lying on the floor with her nurse, Susan, and her dog, Dexter. Aubrey spent her 9th birthday at Disneyland through Make-A-Wish and loved the princesses and the Dumbo ride.

Aubrey started out as a normal child but quickly developed difficulties with her milestones and received many different diagnoses before being confirmed with PKAN two years ago. She quickly lost all of her independence, but she took it all in stride. She was very brave.

Since Aubrey's passing there have been many trees planted in her honor in addition to a new award named after Aubrey at her school. It will be given each year to a fourth grader showing 
caring and courage.

Aubrey is dearly loved and missed by her parents, grandpa, Susan, her sister and two brothers, in addition to her extended family of peers, teachers, therapist and all of the loving and giving people who came into our lives because of Aubrey.

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Our family burns a purple candle in memory of Kelsey as we go through the holiday season. The color symbolizes the unconditional love she shared with all of us. Kelsey’s joyful spirit continues to light our lives as we grieve our loss. 

Kelsey faced many trials because of the degenerative process of NBIA. Over the six years since her diagnosis, walking and talking became increasingly more difficult until she gradually lost those abilities. But even as she reached those final days of her life, she greeted each day with courage and a beautiful smile. 

Kelsey loved her “silly” Daddy; her sister, Kaylinn, who read and prayed with her daily; her “goofy” brother Kenneth, who could always get a laugh; and her cooking partner, Mommy. 

Our lives have been richly blessed by the many doctors, researchers, nurses, therapists, teachers, neighbors, friends and family members who have helped us in providing Kelsey with the highest quality of life possible. Our family continues to be blessed daily with love and support. During these difficult days of loss the songs, “In the Calm” by Sandi Patty and “Held” by Natalie Grant, have helped us cope with our pain. 

We continue to look forward to the day of the Resurrection when we will be reunited with Kelsey. How wonderful it will be to see Kelsey walking, talking and playing.

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It is so hard to believe our three girls are gone. Their suffering is over with and we know they are safe in the arms of Jesus.

We will never forget their sweet smiles, their charming personalities and their cute senses of humor. We feel blessed to have had them for all these years. How we miss them.

David & Mary Miller 
Anna & Andy Byler

2008 Memorial

Truly the Children of God: A tribute to the Miller girls
By Dianne Brown

It is with great sadness that I write this memorial to "my three Miller girls." Amy passed away on Jan 22. Her sister Mandy died last year, and Susie passed away in 2002. I was their teacher for most of their school years, and they will forever live in the hearts of all they touched. 

“Prepare to fall in love." That was a comment told to me when Mandy Miller was transferred to my pre-school classroom. Never did I expect the rewards of what was to come. I had before me the most beautiful child. She had a warm and giving smile that captured your heart. No one knew at that time why she was stumbling often and why her two younger sisters were having the same difficulty.

We were triply blessed when Amy and Susie enrolled. But soon after that, they were diagnosed with NBIA, then called Hallervorden-Spatz. Everyone at the special education school was devastated and we held counseling sessions with hospice and trained counselors. We all shed countless tears.

Their condition required unique techniques and goals with constant revisions for their ever-changing positioning and comfort. They lost their mobility, verbal communication and ability to help themselves, but their mental abilities were intact and continued to accelerate.

Adaptive communication methods were employed and the girls never lost their ability to relay their feelings to us. Trachs, G-tubes and implants followed, along with nursing staff. But each day of their lives they seemed to give more to us than we gave to them.

To love and make every day fun and full of sunshine became the motto of my classroom and we all became better people because of these girls. Because of the special needs, the girls stayed in my classroom for most of their educational careers. Yet, they were not secluded. They were extremely social and were known and loved by the whole district. I truly believe that staying in school extended their lives.

Each girl was unique and caring. Mandy, the oldest, endured all kinds of treatment and trial recovery methods. She suffered more than the others and we all cried so many tears for her as she suffered. Amy was the soft, motherly child who loved her baby dolls and was often given babysitting responsibilities for other children in the class. She took the duty seriously. Susie was the feisty one with an extremely strong personality who loved to play jokes. She seemed to fight her illness the hardest, which often caused greater discomfort. But she hated what was happening to her.

All died peacefully. Susie with Amy holding her hand; Mandy, gracefuly and thankful to others. Amy was in a coma for a short time before her death but awoke with a smile on her face to tell us a last goodbye. 

My heartfelt sympathies to Mom and Dad Miller who gave of their lives for so many years to care for the girls. They are such beautiful people who never questioned their purpose. My love to Anna, their younger sister who is expecting her first child in June. She was a major caregiver with always a smile on her face and never a complaint. 

God allowed us to hold and love these girls for a short time but the impact they had on our lives will last forever. They enriched us all.

2002 Memorial

Susie Miller, who helped inspire Dr. Susan Hayflick to study NBIA, has died at age 16. Susie was born Oct. 12, 1986, and lived in Clymer, N.Y., with her parents David and Mary Miller, and her sisters Amanda, Amy and Anna. She died Dec. 2 at home.

Susie, Amanda and Amy were diagnosed with NBIA (HSS) in 1989. Anna does not have the disease. The Miller family and the Amish community that has several other affected individuals, was Hayflick’s first experience with this disease and prompted her to focus her research on NBIA.

Susie attended Hewes Educational Center in Ashville, N.Y.

Memories of Susie
By Mary Miller

When I think of Susie, I think of the way she smiled and made her eyes sparkle, and how she occasionally showed her temper when we misunderstood.

It was wonderful when she showed other people how much she understood.

It was sad when we couldn’t get a smile from her because she was so miserable.

She was one of the sweetest people I ever knew.

I remember how much she talked and how fast she walked between ages two to four, as if she knew she didn’t have much time.

What Susie liked best was when her Dad came in to have coffee with her and told her he loved no one else as much as he loved her.

I want to always remember the good times we had with Susie when she was healthy enough to enjoy life.

I’m glad that she didn’t have to suffer any more and that she didn’t have to go to the hospital or make the decision to have another surgery or not.

There is nothing to say. It is harder than I thought it would be.

I hope the people at school know how much Susie loved them and that there was no other place she would rather be.

It meant so much to Susie when people took time to talk to her, hug her, or kiss her on the cheek.

Our family is sad without Susie here with us, but we try to be happy for Susie and we like to think of her as an angel that can fly, run, talk, eat and play with all the other angels that have gone before her.

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In Memory Of
Melissa Ann Moore - Inverness, Florida
February 7, 1982 - December 17, 2007

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Brother ‘Bubby’ and a friend recall Ben Patterson’s remarkable life
By Will ‘Bubby’ Patterson (in italics)
and Scott Maple (in regular type) 

Take it from his “Bubby,” Ben Patterson had a way of putting things into proper perspective. 

You were a lover, not a fighter. You smiled through all of the things that happened to you, which is more pain than I will probably ever go through. 

With all his body had to endure, it would have been understandable if Ben had withdrawn. But he had too much to offer. To Will, his older “Bubby.” To his parents, Bill and Kim. To his grandfather, Ray. To his special-needs teammates on the Conway Braves baseball team. To those he warmed with a smile at church or school. 

Without you my life would be so much different. You taught me not to give up, to keep fighting and to keep smiling. 

It was tough to watch as NBIA erased the mobility Ben had so enjoyed. No more running full-tilt, bouncing off walls and bearing the scars that marked him as all-boy. Yet being at the mercy of others to serve as his hands and feet didn’t keep him from romping with Will. 

You had my back no matter what, and I always had yours. You did much more for me in 12 years than most people will do for me in a lifetime. I am blessed to have had you for so long. 

Blessings flowed in all corners of Ben’s world, including for friends made at school in Conway, Ark. Especially Robbie Powell, his best pal from first grade on. 

You were always there for my brother and deeply loved him. You would come over to the house and sit all day even if he was asleep, and those were the times I could tell you truly cared. 

Friends also saw Ben’s precocious side – including his flirtations with girls who would skirmish over who got to wheel him to recess. (The kisses that ensued would occasionally get him in trouble with his teachers.) His charm carried over into his home life, as well, where his granddad Ray – Ben called him Papa – was putty in his hands. 

You impacted his life more than anyone, and he impacted yours, I know. When we were in a room and you walked in he would completely ignore whatever was happening and concentrate on you, his favorite person. 

Now he will focus his charms on dear “Gram,” who preceded him and Papa in death. And on his Heavenly Father, who made a special place for him free of pain. 

It makes me so happy to know that finally you have gotten what you deserve. You have gotten peace. Peace in mind and body. 

And those left behind have gotten so much as well – and not just fond memories: There’s also hope. There’s persistence. There’s faith and love. And an example of how to live - each day. 

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Joyce Marie Pfister, at age 16

Joyce Marie Pfister was born on November 2, 1956. She was the fifth daughter and fifth of six children. Joyce was very active as a young child and as a early teenager. She was a beautiful girl with long, waist-length blonde hair, blue eyes, and a cute little turned up nose. She was diagnosed as being hyperactive in school for lack of anything better to explain some minor problems she was having in doing her school work. At about 17, her mouth began to hang open, she started to walk on her tiptoes, and her hands began to curl up. When she was 19, she started losing her ability to speak. At that time, no one knew what was happening to her. Our family doctor referred her to a neurologist who sent her to Mayo Clinic. It was here that she was diagnosed with possible Hallervorden-Spatz Syndrome. At that time, they could not be absolutely sure because the only way to tell for sure was post-mortem.

In 1985, Joyce had a tracheotomy and a stomach tube put in. Joyce remained totally cognizant during her entire illness and was very intelligent. She was cared for tenderly by her parents until her death on July 11, 2000. Joyce had a very peaceful death for which all those who loved her were very thankful for. We loved Joyce very much and will miss her until we see her again in heaven.

God’s blessings on you and your family,
The Robert & Kathryn Pfister Family

*An informational item: toward the end of her life, the doctor put her on a drug, Elavil, and she could talk for a couple of weeks, and then it was no longer effective. She had not spoken for over twenty years.

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Hi Stijn,

‘Mama’ is here and I’ll stay for the whole day with you.
Saying these words to you I entered your room for eight weeks. 

I have to let you go now, but as I told you,
“Go now Stijn, you’ll be forever in my heart.” 

Stin, you have taught me what profound pleasure means,
You have taught me so much.
But what I will miss most are your arms around my shoulders
And those words only you could say with such sincerity,
Those words deep from your heart,
“’Mama’ you are so sweet.” 

Thanks Stijn.
Have a nice trip,
And remember, Stijn, in my heart,
I am traveling with you.

Love,
Mama 

Can someone tell me what happiness is?
Can someone tell me what pain is?
Can someone tell me what loving is?
Can someone tell me what suffering is?
Yes, Stijn can. 

Stijn can tell what happiness is,
His smile, his life, simply his charisma.
Stijn can tell what pain is,
Real pain, not a scratch, but enduring pain.
Stijn can tell what loving is,
Showing every day again I love you. 

Stijn can tell you what suffering is,
His last three months, those were suffering. 

All this, and so much more, made him an exceptional kid, one of a kind.
His smile every day, a real kid. 

Stijn, I’ll never forget you.
Thanks to you, I started believing.
Now I know there is something up there.
One day, I’ll come join you
And we’ll be one again. 

Love,
Your brother Michiel

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My sister Julie’s struggle with NBIA has ended. Only a few weeks have passed, and the loose ends surrounding her death still need to be taken care of. And even though the loss is still constantly on my mind, this may be the best time to reflect on her struggle, the impact of her death and the influence Julie had on my family. 

Shortly after Julie was born in Flint, Mich., my parents as well as my brothers and I knew our youngest sibling and only sister would not be like other girls. She was developmentally challenged and would require much more care. Our family and friends rose to the challenge. We were drawn closer together and became very protective of Julie. The struggles we faced were nothing like what was to come. 

Despite her impairment, Julie was very active and had many interests. She attended school at the Elmer Knopf Learning Center. She was active in the Special Olympics, bowling and just about everything else the school offered. My parents, Roy (who preceded Julie in death Feb. 7, 2001) and Maxine Smyth saw to that. 

Julie loved music and dancing. She loved going to concerts and listening to country music. She was one of Elvis’s biggest fans. She vacationed from Michigan to Florida to California and places in between. My family had a summer cottage on Elk Lake in an area people from Michigan call “up north.” Julie cherished her visits there and named it the “rock pile,” after a pile of rocks used to construct the fireplace. Her life was relatively good and she was a very happy person. 

When Julie got older she moved to a group home with other special adults. Not long after that, we noticed a slight change in her condition. Tests were inconclusive. Finally, doctors at Henry Ford Hospital made the diagnosis of NBIA. As you can imagine, the prognosis hit us like a ton of bricks.  

Later Julie left the group home and lived at an area nursing home that offered physical therapy to assist in Julie’s declining condition. Although her abilities worsened she still had a smile for everyone. Not much information was available eight years ago and what information we could find was not good. 

As her abilities declined and reached a plateau, we searched for answers. Eventually we heard of NBIA Disorders Association and turned to this terrific association for information. We read each newsletter and knew we were not alone in our search for answers. We read stories about other young people deprived of a long, healthy life and somehow hoped our sister could cheat the inevitable. We appreciate the association being there as a source of support and information. 

On Feb. 17, the inevitable could wait no longer. Julie was taken from us. Though her life was cut short, the impact she had on those who loved her will last forever. She made us better people. 

Thanks for everything, 

Jack Smyth

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Kenny was truly a gift from God.  We adopted Ken at 10 days old and he immediately captured the hearts of all who met him from that day on.   His dad says he had a winsome smile that would melt your heart.  When he was just 4, Ken won the Mr. Personable award at school.
 
Even in the mist of daily pain, Ken lived a life of purpose. This was something we wanted people to know about those with special needs. His neurologist said that was one thing Ken had taught him and "much" more. 
         
Most people remember Ken for his sense of humor and how he liked to tease. But we remember him for his unconditional love, his super hugs and unbelievable strength. We remember how he laughed so hard at his dad, he could hardly breathe; how he would come home from school with kisses all over his face; how he loved to bake cookies with his sister and listen to music in his brother's room; how he would play Pretty Pretty Princes with dad; and how he would enjoy those long walks with mom.

But we also remember the times of great pain. His biggest comfort was when we talked about heaven and promised some day he would walk and talk and never have pain again.  He would smile so big and we could see in his eyes he believed without doubt.  And now we feel we have kept our promise. 

We lost more than a son and brother, we lost our best friend, our buddy. We believe if Ken could have talked, his last words would have been, "Mom, tell everyone, thank you". 

We love and miss you more each day.
Always, Mom, Dad, Laura & Jeff

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Our children, wherever they are in this world and at whatever age they may be, are all alike. Reading each memorial tells us what our children gave us in their lifetime. They taught us courage, compassion, patience, hope, and always, to share a smile. They thought not of themselves, but of others — others who were so much better off than them, yet it was they giving to us. 

Pete was one of the same. He spared his own pain and difficulties from others so they might see his true inner spirit, a spirit that could never be broken by anything here on earth. Each of our children's spirit truly belongs to God. 

Pete was an avid fan of sports, music, movies — and all the current gadgets. His knowledge overwhelmed me. He could learn to compensate and come back to do even more. He never spoke of anger or unfairness with this horrible disease, only of hopes and dreams for tomorrow.  

In closing Pete said it best: "To my mother…thank you for giving me, a chance to live life. You gave up your life simply, so that I may have a chance to live mine. You shall always be as my Angel, just as I shall be as yours." 

May I never forget what you taught me so that I may continue the lesson to others. 

Proud to be —  

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In Memory Of
Wendy van Schijndel - Germert, The Netherlands
November 26, 1981 - August 17, 2009

You can rest now,
You've fought your fight,
You've done it bravely.
Who can understand how you've suffered,
Who can feel what you've endured?
You can rest now.

With these words we want to indicate how difficult the last years of Wendy's life have been. She was a happy, sweet child, and although she became ill at a young age, she still could enjoy even the smallest things in life.

Wendy was a little girl with great courage. She was never frightened. She had to adapt to an ever-changing situation. But none of that took away her sense of humor.

Now she has left all of that behind. Her sister Cristel wrote:

Never more walking together outside,
To hear how the birds whistle.
Also no longer going together to the city,
where I've had so much fun with you.

Wendy loved to tease others and also didn't mind being teased. Mostly, she loved being pampered. She enjoyed having attention showered upon her. To tease and get pampered, perhaps that's the reason elephants became her most darling animals.

We gladly would have given you even more attention. Now we will do that in our memories. Thanks for all the joy you gave us. Mum and Dad

You were a lovely sister with incredible willpower;
know that you will always be in my heart. Cristel

Wendy, you were a great sister to us. You showed us what fighting and enjoying is. We would have gladly gone on pampering you and giving you our love. The only thing we have now are the beautiful memories, which we will forever carry in our hearts. Jurgen and Maayke

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Jacob, an inspiration and example of strength to us all, left us to be with God a little over a year ago. He possessed the ability and desire to laugh even through the worst kind of adversity. He had the ability to melt the hardest of hearts. We are all richer for having him as a part of our lives. Our hearts still break for having lost him but we know that he is now pain-free and at home where he belongs, with all the other angels. His memory will always be with us along with the valuable lesson he taught us--that life is precious but fragile. 

Jacob loved his pony Mojo who seemed to recognize his needs and reacted to him accordingly. Hommer, his dog, protected and loved him as if it were his purpose in life to do so. 

The Disney channel captivated Jacob and the TV images became real for him when we visited Disney World in 2003. He met all his favorite characters in person. The light in his eyes and the smile on his face during that visit are some of the most precious memories we cling to. Our lives will never be the same now that we've had the privilege of being a part of his life. 

As painful as it was to lose him, we would never trade the opportunity to have known and loved him. 

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