Boy with rare disease inspires family

wwny Boy with rare disease inspires family

DEGRASSE, N.Y. (WWNY) - You first notice how content 17 month old Hunter Van Ells is. Even happy. And how much his parents care for him. And the love they have.

“He may not be here for a long time. But he has made an impact on everyone he meets. He has changed so many lives,” said John Van Ells, Hunter's father.

Hunter has a rare genetic disease: Rhizomelic Chondrodyplasia Punctata - RCDP for short. An advocacy group says only about 100 children in the world have it. Few reach their fifth birthday.

“He's got his mom's toughness in him. He's a strong kid. He bounces back amazingly from surgeries, from being sick,” said John.

Hunter is fed through a tube. He can have severe breathing problems. He can't walk or crawl. A big step was getting surgery and eyeglasses to correct cataracts.

“He immediately was able to locate Ashlee. And just instant smile. Being able to see his mom,” said John.

One of the toughest things about RCDP is it's so rare. Information is hard to find. So is support. John and Ashlee turned to a group called RhizoKids International.

“I want to be able to offer new parents hope...You fight for your child. You give them every chance that you can. And you live each day to the fullest,” said Melinda Holladay, RhizoKids International president.

Hunter has numerous medical appointments in Syracuse. The six hour round trip is now routine for the Van Ells. Family pitches in at home.

“He's no different than our son. He's just got different abilities. And he's still just as lovable and happy,” said Stephanie Boardway, family member.

Paying for it all is another problem. The Van Ells barely talk about it. But a GoFundMe campaign has been started to help.

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