“There is no effective treatment to slow the deadly progression of Terry’s disease”
Terry was initially a very happy, normal little boy. He hit all his developmental milestones like walking, talking, running and playing. When he was 3 years old, Terry started stuttering his words and having to repeat a lot of what he was trying to say. Over the next two years, his vocal skills continued to decrease, and he started having balance issues; it was like he was tripping over his own feet and would fall a lot.
In 2000, Terry’s father was diagnosed with Huntington’s disease, an inherited brain disease that results in the progressive breakdown of nerve cells in the brain and causes loss of physical control and mental faculties. The diagnosis lead Terry’s family to test him as well; Terry tested positive.
In recent years, Terry has lost his ability to speak and walk. He chokes on anything he tries to eat and received a feeding tube in 2010. When Huntington’s disease appears before the age of 20, it often results in faster disease progression; there is presently no cure or effective treatment to slow the deadly progression of the disease.
Terry requires a personal aide to go to school with him and relies on his mother for day-to-day activities like getting dressed or brushing his teeth. Despite his circumstances, Terry is always happy and smiling. The 16-year-old is a junior in high school and is on the honor roll.
Terry is an inspirational young man that continues to stay positive throughout his struggle. He loves Superman and collects Superman action figures, even though his decreasing motor skills don’t allow him to play with them. Terry is our Superman and we’re so excited to grant him a special Superman wish!
Illness: Juvenile Huntington’s Disease