Hernando boy among 38 people stricken with rare disease

Local News

A 4-year-old Hernando County boy is battling a rare neurological disease and his parents are desperate to find a cure.

JJ D’Angelo is an adorable little boy who loves his parents and is also very curious. But behind his cuteness and his glasses is a rare disease that only 38 people in the world are known to have.

“We have reached out to the other 30 families and we’ve spoken to the them so we know more than the doctors really know at this point,” said father Jeff D’Angelo.  

Little is known about the disease other than it’s called champ1 and right now, there isn’t a cure.

“All the kids have the same, similar features. They have low muscle tone or have low muscle tone at birth, they’re globally delayed. They have speech impairments. They have different levels of functionality,” said D’Angelo.

JJ walks and can communicate, thanks to parents who spend their life doing everything they can to make sure he has a good one.

“My little boy means the world to me. My husband and I will do anything that we can and we are never going to stop giving up on our hope and doing everything we can to get the help and research that he needs,” said Katis D’Angelo.

Since the disease is so rare, research is astronomical. The D’Angelo’s have found a group of doctors at Duke who will study their son but it comes with a price tag close to $400,000.

“We are just trying to raise the funds so we can get research, we can potentially get treatment. I am still hopeful, I want a cure, I want to make him have the best quality of life,” said D’Angelo.

The days are long and challenging for the D’Angelo’s but they won’t give up on the fight for their son.

“A break through, something amazing that could change the course of his life. That’s our hope and prayer,” said Jeff D’Angelo.

The family is asking for help to fund research for their son. Learn more here.

Copyright 2019 Nexstar Broadcasting, Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.

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