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Hallervorden-Spatz Syndrome Families
Page One
(This page updated November 25, 2001)
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| These are pictures of two sisters, April and Tracie Flinn. April (left) is 19, and Tracie is 17. They live in Northridge, California. April began having HSS symptoms at the age of 8, while Tracie was 11. | |
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| April and Tracie attend Wheelchair Sports Camp at California State University, Northridge. They played tennis, basketball and archery, as well as swimming. The equipment was adapted to each individual. There were volunteers for each person depending on their level of need. It was a wonderful experience for the girls. | |
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Thomas Hayes and his dad, Jim, work together in the kitchen of their home in Ben Lomand, CA. Jim was 22 when he was diagnosed with HSS, he is now 28. |
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Kimberly is 15 and in the ninth grade at her local high
school. She is pictured here with her one-on-one aide, Tanya Ball, who
goes to classes with her and helps to facilitate her learning. |
Kimberly Wood of El Cajon, CA |
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Kimberly enjoys a day at Mission Beach in San Diego for her 12th birthday. She is in a wheelchair made for the beach and ocean that was provided by the lifeguard station at no charge. The chair floats on top of the water so you can feel the motion of the waves. |
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Christina, Austin and Dianne Gray of Naples, Florida. At the time of the photo, Austin was ten years old and had lost the ability to verbally communicate, eat solid food, and could not walk, even though he had lived a "normal life" until the age of five. He adapted to the challenges of living a life NBIA with grace, humor, and tenacity as evidenced by his determination to communicate through blinking, sighing or smiling. Austin passed away February 25, 2005 at the age of 14. |
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| Kenny, 12, (left) and Jeff, Ken, and Laura (right) Stromsta live in Shorewood, Illinois. Kenny has shown symptoms of HSS since the age of 9 months, though he was not correctly diagnosed until age 5. Kenny cannot walk or talk, and is tube fed. | |
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Christine, Benny and Melissa DeCock. The DeCock's live in Belgium. Melissa began showing symptoms of HSS at age 4. The top picture is with her mom, in August, 1995. |
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Her father made this special bicycle himself so that he and Melissa could enjoy it together. Some of Melissa's favorite activities were swimming, watching Disney movies and playing with her Barbie doll. Her mom says she was always smiling. Melissa passed away on 2-27-96, at the age of 7. |
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Emilia and Szymon Jr. Draheim live in Poland. Emilia is 14 years old and Szymon Jr. is 9. The age at onset for both was 1 year. |
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Stenia Draheim is pictured here holding her son, Szymon, Jr. With her is the group of volunteers who help them on a regular basis. |
