According to a story from CBS News, Garland Benson, age 14, has undertaken a daunting task in order to save the life of his older sister Christiane. She was born with the rare disorder known as Batten disease. Garland is spearheading a campaign to raise $6 million over the course of two years.
About Batten Disease
Batten disease is a nervous system disorder that tends to appear between the ages of five and ten years. This neurodegenerative disease is caused by mutations which affect the CLN3 gene. Girls tend to display symptoms later than boys, but their disease tends to progress more rapidly. Diagnosis is often difficult. Symptoms include seizures, vision problems, repetitive speech, learning regression or delays, scoliosis, decreased muscle and body fat, changes to personality and behavior, poor coordination, and speech loss. Symptoms generally progress over time. There is only one drug for Batten disease that can slow progression, but it is only effective in certain cases. Most treatment is supportive, and the disease is ultimately lethal. There is a dire need for more effective therapies to improve survival times and outcomes for patients with Batten disease. To learn more about Batten disease, click here.
Fundraising For a Cure
The Benson family has started their own foundation called Beyond Batten Disease. The organization is committed to curing Batten disease by funding research and treatment. The $6 million is intended to pay for a clinical trial which will test to experimental drugs that could be possible treatments for the disorder. One of these therapies could save Christiane’s life.
Hope For The Future
Garland is personally committed to raising $1 million of the money needed himself, and he is already within striking distance of the goal: only $150,000 more is needed. His methods have included social media outreach, selling lemonade, and racing events. The family has been through a lot, and the moment that Christiane begins to participate in the trial will certainly be a special one. Hopefully, one of these experimental therapies will be effective in treating Batten disease.
To learn more about the Beyond Batten Disease Foundation and donate to the cause, click here.
