Brian’s Story

Hammerfest 2014Until the age of 6, Brian appeared to be a typical, “healthy” little boy. He was doing well in school and sports and was even skiing black diamond trails in Vermont.

Unknown to his family, Brian was born with adrenoleukodystrophy (ALD), a hereditary disease of the central nervous system. This rare disease manifests itself in boys in early childhood. The boys are born missing an enzyme that breaks down long-chain fatty acids that eventually build up and lead to a process that destroys myelin in the body. Myelin is the insulating sheath surrounding nerve cells, enabling them to conduct impulses between the brain and other parts of our body. The clinical course of hereditary demylinating diseases is tragic. Previously normal children are deprived rapidly of sight, hearing, speech, ambulation and the ability to eat most food and liquids by mouth. Brian lost his sight, speech and ambulation at the age of 7, but continues to have a keen sense of hearing.

Despite the many challenges Brian copes with each day, he continues to teach much to many. Brian has an acute sense of hearing and is cognizant of the world around him. He has a busy life with his family and his own activities that he enjoys.

Brian seems to bring out the best in everyone. He has a great sense of humor and because he depends greatly on his hearing, there is not too much that he misses.His big smile and his laughter are infectious. Brian has taught those whose lives he has touched the importance of faith, love, family, friends, good health, kindness, and tolerance of others.

Brian has helped everyone around him learn to understand the good that can come from a most challenging situation. There are so many positive experiences and great people in Brian’s life. We have learned to never give up and to look for the silver linings in life.

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