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Hallervorden-Spatz Syndrome Families
Page Two
 (This page updated March 19, 2000)

 

Jacob Wylie is 5 years old from Tennessee and was diagnosed Feb., 2000 with HSS. He has never been able to speak and has only had limited walking ability. Jacob loves to ride his pony MoJo. He also loves to watch Barney, work puzzles and play with his Hot Wheels race track.

 

 
Craig Brenner is 26 years old and lives in Green Bay, Wisconsin. Though Craig had problems from an early age, he was not diagnosed with HSS until approximately ten years ago. Craig's favorite hobbies include watching wrestling and playing Nintendo. 

 

 

In 1998, Stevi Rae Fuller of Groesbeck, Texas, received an award presented by Mrs. Laura Bush for a bus safety work poster.  Left to right: Carl Kirst , Stevi, First Lady Laura Bush, Rep. Clyde Alexander.
 
 
Nov. 2002 - Kathy Fuller and her daughter,  Stevi Rae, 13, with her kitten Pepper. They enjoy a moment of peaceful life which has been a rare blessing since age 9 when Stevi was diagnosed with HSS and began losing her ability to walk, talk, and swallow.  Last year she had a deep brain stimulator placed which has been beneficial.

 

 

 Lidia-Diana, 6, and Tania Martins, 10, live in Geneve, Switzerland. They enjoy playing with other children, puzzles, watching TV, books, and listening to stories.

 

 
Michael M. Cohn, age 31, from St. Louis Park, Minnesota. Though Michael has had symptoms of HSS since the age of 4, he has graduated from the University of Minnesota with a bachelor of science, and a Masters of Education in Human Resource Development. Michael has his own company called "Promote Awareness" which you can visit at http://www.promoteawareness.org. Michael's motto is "you don't know what you can accomplish unless you try."

 

 

 Neil Saubo is 24 and lives in Sao Paulo, Brasil. HSS symptoms started in 1991 with orthopedic problems and have progressed to the loss of speech and the ability to eat only liquids. Neil attended a University for Veterinary Medicine but had to stop his schooling last year. Neil enjoys watching T.V., smoking, and listening to music.

 

 

Samantha Jennings, 14, lives in Ottertail, Minnesota. Samantha had problems from birth and was diagnosed with HSS in 1992. She enjoys playing card games, coloring, watching T.V., listening to tapes, and most of all, riding a jet ski with assistance.

 

 

Michael McGourthy, 11, and Bobby, 7, play pop warner football. They live in Middleboro, Mass. They were diagnosed with HSS in 1999, and Michael has some problems with balance, speech, and fine motor skills. Bobby doesn't seem affected yet, but his MRI shows indications of HSS and blood work given to Dr. Hayflick confirmed the diagnosis.