How you can help kids born with rare genetic disorder

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NORTH ROYALTON, OH – A local family is hoping to raise awareness and money for a very rare genetic disorder.

It’s called Rhizomelic Chondrodysplasia Punctata. It affects the brain, mobility, growth and speech.

Mindy Lee’s children, Jake and Jordyn, were both diagnosed with it as babies.

They need 24 hour care.

Mindy told FOX 8 she was devastated when she first found out. Doctors told her they wouldn’t live very long.

It was news she didn’t want to believe and it looks like she was right in doing that. Her daughter is now 8 and her son is 12.

"Every day is a blessing. We treasure every moment because nobody knows what's going to happen. I told them that only God knows,” said Lee.

Lee said when she started researching the disorder, there wasn’t much out there so she decided to start the Ohio chapter of RhizoKids.

The group raises both awareness and money for research.

They also host an annual fundraiser. That’s happening on Saturday from six to 11 p.m. at the Keller Center in Berea. Tickets are $40.

"The fundraisers are great because other than that, money for medical research doesn't come from anywhere else, so it's something that is very important,” said Jordyn and Jake’s Father, Jeff Cirner.

For more information on the event and how to make a donation, click here.

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