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10-Year-Old Boy Fighting Rare Batten's Disease

ROCKTON - Four years ago, Brock Scarpetta was a normal, active, six-year-old boy who enjoyed outdoor activities including horseback riding.

There were no signs that he would be diagnosed at seven -- with the extremely rare Batten's disease, which has no cure -- forever changing his life and his family's.

"[There were] no symptoms. He was just a typical six-year-old boy. He fought with his sisters, argued over soda, a piece of candy, played sports, he played T-ball," says Brad Scarpetta, Brock's father.

With no real answers from doctors on the terminal illness or their insurance company on what to do next, Brad and Christina Scarpetta scrambled, looking for ways to help their little boy.

Brock's parents, Brad and Christina continue an ongoing fight with their insurance company over what's covered ranging from special needs equipment, treatments, and supporting his liquid diet.

There are less than ten cases in the United States.

The debilitating disease causes children like Brock to lose motor skills over time, with a life expectancy not surpassing his teenage years.

Brad found lead researcher, Jill Weimer, who is testing treatments for Batten's.

Jill Weimer is a Senior Director of Therapeutic development at Sanford Research.

"It really has a rapid decline, and so they lose motor movements, they regress, their cognitive abilities, their language skills, they go blind. They start to get a lot of seizures. And these kiddos usually pass away and succumb to the disease in their early teens," says Weimer.

Families who are fighting the clock trying to find treatments are now taking matters into their own hands raising not only awareness, but funds for research.

That led the Scarpetta's to another family in California, Kristen and Gordon Gray, who have not one, but two daughters carrying the rare disease.

Brad says the Gray's are the "pioneers in leading the research for Batten's."

Brad adding, "They've raised close to $6.5 million dollars. They're helping more than just their kids. They've helped quite a few kids get Gene Therapy."

The Scarpetta's credit being surrounded by love and support from people at work and their family.

Brett Scarpetta -- Brad's cousin -- has a two-year-old son who is in remission from leukemia; yet still finds time to help Brock and his family, even helping with the fundraising event.

Brad also appreciates his company CRM Madison for being understanding with Brock's appointments and care.

Now, the family of six continues to journey on with hope in their hearts that one day a treatment will bring a sense of normalcy.

Christina Scarpetta says, "You don't know what the future holds...To keep going and not give up is the main thing. You live day-by-day."

The Scarpetta's are holding their annual fundraising event this Saturday, September 30th in Loves Park at the Forest Hills Softball Diamond.

They will host a softball tournament, corn-hole tournament, and even have a pig roast for the event.

For more information, you can visit www.cowboyforacause.com.

The Gray's website is www.curebatten.org.


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