Foundation helps kids suffering from rare degenerative disease - FOX 35 News Orlando

Foundation helps children suffering from rare degenerative disease

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Jamie Stutzman; Reesa Stutzman Jamie Stutzman; Reesa Stutzman

A little Arizona girl is fighting a rare disease -- and now a foundation -- created in her honor is hoping to help give care to other children suffering from the very same thing.

Months ago, Reesa was a healthy little girl -- long before her parents learned of her diagnosis.

"I couldn't believe that my daughter was dying.  She was perfectly healthy and I just didn't understand," said Jamie Stutzman.

Reesa's mother and father received the news their daughter had Krabbe disease, which is a rare degenerative disorder that affects the nervous system.  There is no cure and most children don't live to see their second birthday.

"Her brain has trouble communicating with the rest of her body, the rest of her nervous system, so that means over time, the disease degrades her motor skills, her vision, her hearing," said Sean Stutzman.

"We do CPT therapy that helps get her to cough because she can't swallow on her own, so it helps get all the secretions out so she can cough now her own," said Jamie.

That takes place 25 times an hour.  However difficult, Reesa has been fortunate.  She is able to receive the care she needs. 

There are families out there who can't afford it or don't have the means, so Reesa's parents started the Baby Reesa Foundation in hopes of helping those families meet the needs of their children.  Comforting their little ones until more help arrives.

'The only kind of care is comfort care for them, but if you catch it before symptoms, then there's treatment like a bone marrow transplant or stem cell."

Baby Reesa has already beat the odds.  At 28-months-old, she wasn't expected to live this long.

Baby Reesa Foundation Golf Tournament
Dec. 14, 1:30pm
Gainey Ranch Golf Club
7600 E. Gainey Club Dr.
Scottsdale, AZ 85258

Baby Reesa Foundation, Inc. -

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