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Rockton family spreads awareness of rare disease after son is diagnosed

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Monday, July 17, 2017

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It's a disorder you've probably never heard of... it's called Batten disease. Only a handful of children are diagnosed with it in the United States and one lives right here in the Stateline.

Ten-year-old Brock Scarpetta loves horses and watching the TV show Bonanza, but he isn't able to tell you that.

"His brain's deteriorating, slowly, but its deteriorating and that's the best way to explain it," said Brock's mom Christina Scarpetta.

Brock has Batten Disease, a rare genetic disorder that affects the nervous system.
It's typically fatal by the late teens or early twenties.

"You never want to hear those words, that your son has a terminal illness," said Christina.

Brock was diagnosed three years ago, after suffering from seizures and speech problems.

"His walking, he's got a gait, his running, that's gotten worse over the last three years, full sentences they've become rare," said Brock's dad Brad Scarpetta.

On average, it takes more than seven years to diagnose the rare disease.

The Scarpetta's say they were lucky to get an answer within a year.

"To have a diagnosis, to have answers, you know at least you know, its something to work off of," said Brad.

With that diagnosis, the Scarpetta's have set out on a mission, Not just to try and find a cure for their son...

"I pray everyday for a cure for him."

...but to teach others about Brock's disease.

"I want people to know that when they hear that word, i want to be able to cringe to because it is a horrible disease and it does takes kids away," said Christina.

From putting cards in Brock's pocket explaining his condition...

"You get them thinking, like, 'oh my gosh he's really not a bad kid, and different thoughts, so when they see the next kid, they aren't so judgmental,'" said Christina.

...to holding fundraisers in his name.

"People know, the word is getting out there, slowly but surely people know."

The Scarpetta's say they aren't giving up hope that one day it will all be worth it.

Brock's family is working on raising $2 million for a possible treatment for his condition.

To learn more about Brock's story, you can visit his foundation webpage here.

The family's next fundraiser is a BBQ and softball event at Forest Hills Softball Complex on September 30.

Author: Taylor Utzig
Source: WREX
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4.0 from 1 vote
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