Local parents fight to raise awareness of condition that plagues less than 100 children in the world

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NORTH ROYALTON, Ohio -- In a world where we all take so much for granted, the little things are what make life worth it for Mindy and Doug Lee.

The North Royalton couple is raising two children with a rare disease called Rhizomelic Chondrodysplasia Punctata, or RCDP.

Fewer than 100 children in the world have it. And most of them won't live to see their fifth birthday. It was devastating news delivered to the mother of a newborn.

"After he was diagnosed, they told us he wouldn't make it to be 2 years old and if he did, enjoy your time because it probably wouldn't make it past that."

But Jake and his sister, Jordan are different.  He'll be 17 this summer. She'll be 14 in the fall.

They're "beating the odds by leaps and bounds," a joyful Mindy explains.

Rhizo Kids, as they're known, live every day in a medically fragile state. They have short limbs and calcified bones. Talking about Jordan, Mindy explained, "her arms are so short she can't itch her nose."

Rhizo kids develop cataracts and respiratory issues. Exposure to the common cold could turn into a life threatening situation.

RCDP is rare and it's terminal, so when Chelsey Martin heard that diagnosis halfway through her pregnancy, she was at a total loss, as Mindy had been all those years ago.

"I was 20 weeks pregnant when I went in for my anatomy scan. I'm thinking I'm just going in to find out if I'm having a boy or a girl," she said. "I wasn't even thinking they were going to tell me anything major."

She went online in search of support and there she found RhizoKidsOhio, which Mindy and her first husband Jeff Cirner began.

"That was a big deal to me because when Jake was born in 2002," said Mindy. "The internet was nothing like it was and we just felt lost. We had nobody to turn to."

Chelsey suddenly did.

"It's an incredible gift to have the support so nearby," she said.

As a leukemia survivor, it's a bit of a miracle that baby Charlie was ever born. Chelsey and her husband feared she wouldn't be able to get pregnant so they decided to share their love and their home as foster parents.

"I asked my husband....I know that God has called us to be foster parents and I'm totally good with that but can we just try to have one baby of our own, like that I never have to give away," she said.

Loving those foster children and letting them go has been one of the toughest challenges this couple ever faced. And then sweet Charlie came along to teach them more life lessons.

"I have these foster kids that I have come into my home, I fall in love with them then they leave. Then I get a terminally ill child,  I think it's going to be my one kid I never have to give back and I know someday I'm going to have to give Charlie back and it's going to probably be the hardest thing I ever do," she said.

Through breathing treatments and therapy, tube feedings and preschool, the hope everyday is for a cure.

This year RhiszoKidsOhio is celebrating 10 years of raising money to find a cure. Their annual fundraiser is Saturday, May 11, at St. Adalbert in Berea.

Chelsey, who has been a part of it since Charlie was born three years ago explains, "the thing that's so neat about the fundraiser is all the money goes directly to Rhizo Kids International which is an organization that is trying to raise money for this clinical trial which if we can get that off the ground we think would be really life changing for our kids."

The clinical trial involves a drug developed to treat Alzheimer's disease but shows some promise for treating RCDP.

Mindy envisions a future where he children can fully express themselves.

"They're in there. They might not be able to tell you right now," she said. " Our hope and our prayer is  one day that they will, that they'll start spitting out words."

And for Chelsey, " Our hope for Charlies is that he continues to be a beacon of  light and joy. We don't know how long he's going to be with us but while he's here he's just going to continue to fight and we're going to continue to fight for him."

If would like to know more about RCDP or donate to help find a cure click here. 

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