According to a story from CBS News Boston, Scarlett is just six years old and was recently hit with a devastating diagnosis: Batten disease. Unfortunately, very little can be done to arrest the progression of the condition, and her walking ability has already started to decline. However, the community of Hopedale is coming together to uplift and support her. 

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.

Embracing Scarlett

One day at Scarlett’s school, all of the students showed up wearing teal t-shirts with the words “Scarlett’s Tribe” printed on them. Gina, Scarlett’s mother, said that the first sign that something wasn’t right appeared around three years ago, when the girl had a seizure during dinner. Seizures are often the first sign of the onset of Batten disease. The family are newcomers to the Hopedale community, having moved from Texas in hopes that they would have better access to a potential treatment at Boston Children’s.

While it’s difficult to observe the decline in the girl’s abilities to walk and speak, Scarlett still has a bright and friendly attitude. Her parents are spending as much time as they can with her and have embraced the support that they have received from the Hopedale community.