According to a story from koco.com, the community of Ada, Oklahoma, recently held a birthday celebration for a local affected by Alexander disease. Hunter Goodwin recently turned 18 years old, which is a milestone for someone living with this rare illness; many patients don’t survive past their first decade of life. The celebration came in the form of a small (and socially distanced) parade.
About Alexander Disease
Alexander disease is an exceptionally rare form of leukodystrophy. Like other leukodystrophies, it is a progressive disease that leads to major declines in mental and physical function. Alexander disease is linked to a mutation affecting the GFAP gene. The disease mostly occurs before age two, but some patients are affected by a juvenile onset form that can appear as late as 13 years. Though it is heritable, most cases are the result of a sporadic mutation. The illness causes symptoms such as enlarged head, developmental delays, spasticity, seizures, dementia, hydrocephalus, and intracranial hypertension. These symptoms tend to worsen over time. Unfortunately, treatment for the disease is primarily supportive and symptomatic. There is an urgent need for more effective therapies to treat the disease, as most patients do not survive beyond ten years of age. To learn more about Alexander disease, click here.
Hunter’s Story and Celebration
Hunter’s mother Brandi said that he was first diagnosed in 2005, which was a very shocking moment; only about 500 cases of Alexander disease have been officially diagnosed. While Brandi has had to watch her son decline over the years, she is very grateful that he has reached his eighteenth birthday:
“Most of these kids don’t live past 10 years old, so Hunter turning 18 is huge.”
Hunter is a senior at Latta high school. The procession included law enforcement and first responders, who honked their horns and blared their sirens as part of the parade. Brandi said that she was very thankful for the enthusiastic turnout from the community despite the challenges of the coronavirus/COVID-19 pandemic. In these times of difficulty, community support is more important than ever.