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Hallervorden-Spatz Syndrome Families
Page Three
 (This page updated March 19, 2004)

 

Andy Byler

July 26, 1991 - Nov. 16, 2003

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

 

 
Christy is 31 and lives in Charlotte, North Carolina. Christy has been developmentally delayed since birth, but did not start showing HSS symptoms until approximately 10 years ago when her balance problems escalated and falls became frequent. In April, 2000, Christy was diagnosed with HSS. There is no consensus as to whether she has had HSS since birth or just for the past 10 years. One thing Christy loves to do is travel by car.

 

 

Matthew Wagner is 9 years old and lives with his family in Grand Rapids, Michigan. He loves computer games, Nintendo, movies, Legos and riding his bike. His speech is clear and he is able to walk and run, though he does have balance problems. His physical HSS symptoms started around the age of 7.

 

 

Joyce Pfister, age 16

Joyce Pfister, age 44
Joyce began having noticeable HSS symptoms around the age of 17, and at 19 lost her ability to speak and was diagnosed at the Mayo Clinic. At age 29 she had a tracheotomy for breathing problems and a stomach tube for feeding.  Joyce enjoyed listening to TV and conversations with friends and family. She lived with her mother and father in Raymore, Missouri, until she passed away on July 11, 2000, at the age of 44. Toward the end of her life, the doctor put her on the 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.

 

 
Glenn Russell is 14 years old and lives in England. His HSS symptoms began around the age of 16 months. He currently is no longer able to walk or speak and is tube fed.