Miracle children surviving rare disorder seek cure - Cleveland 19 News Cleveland, OH

Miracle children surviving rare disorder seek cure

These children have beat the odds, but family members still hope for a cure to their rare disorder. (Source: WOIO) These children have beat the odds, but family members still hope for a cure to their rare disorder. (Source: WOIO)
NORTH ROYALTON, OHIO (WOIO) - A North Royalton brother and sister are living miracles. The siblings were both born with a disorder so rare, that they're the only kids in Ohio it. Now they have one mission: to find a cure. 

Parents Jeff and Mindy were told their children would not live past their second birthdays. But 12-year-old Jake Cirner and his 9-year-old sister, Jordyn, are beating the odds. 
 
"It was heartbreaking once we found out what the diagnosis was. They basically said he has Rhizomelic Chondrodysplasia Punctata," says their mother, Mindy Lee. 
 
Also known as RCDP, it's a rare terminal metabolic genetic disorder. RCDP is a form of dwarfism that causes many disabilities, including severe developmental delays, seizures, cataracts and limited range of motion. There are only 50 children in the world living with it. 

Jake and Jordyn have respiratory issues and both have feeding tubes. In spite of their challenges, they are happy, loving children who are defying the odds. 
 
"They smile. They laugh. They're happy, little angels on earth with us. They're gifts from God. That's truly what they are," says their father, Jeff Cirner.
 
The parents say their children inspire them and others every day.

Their mission is to continue to educate others, plus raise awareness and money for research to help other children and families faced with this rare condition.
 
"My hope is that they find a cure and to help future kids," explains Lee.
 
Rhizo Kids International and the Rhizo Kids Ohio Chapter have been raising money to start a national history study. Click to learn more about the disorder and how you can help. 

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