Kids with rare disorder are beating the odds

Kids with rare disorder are beating the odds

NORTH ROYALTON - One family raising two kids born with a rare genetic disorder is serving up a huge perspective check for the rest of us.

The disorder is called Rhizomelic Chondrodysplasia Punctata, or “RCDP”.

15-year old Jake and 12-year-old Jordyn Cirner weren’t supposed to be alive today because of it. RCDP kids typically don’t live to see 5-years-old, but Jake and Jordyn are beating the odds.

Still, most of the stuff many of us take for granted, Jake and Jordyn have never done on their own.

Like eating and even breathing.

Neither can walk or talk. Their arms and legs are too short to do things most of us don’t think about, like scratching our noses.

They’ve been through cataract surgeries, stomach surgeries, back surgeries and arm surgeries.

Their Grandma, Debbie “Gran” Detmayer says, “They're basically frequent fliers at Rainbow Babies and Children’s Hospital."

Jordyn needs breathing treatments three times a day to do what her lungs can’t.

Their mom, Mindy Lee,  explains how they need to be hooked up to treatments and stabilizers as they sleep in the master bedroom because they have seizures.

"The heartbreaking thing is I'll be at Jordyn's bedside with her having a seizure and all of a sudden I hear Jake having one across the room and I want to split myself in half but I can't."

A series of syringes are meticulously spaced out to deliver meds throughout the day.

Jordyn takes feedings every hour through a tube directly into her stomach.

It’s so clear these kids are the centerpiece of their North Royalton home.

It’s so clear that every day is celebrated like the gift that it is. 

So clear that, in the moments that laughter rolls out of Jake’s smiley face that it is music to this family’s ears.

“They communicate in their own way. For Jake, his whole world is light and music,” says Lee.

In fact, Jake has his own song playlist. The chosen proven spirit lifters that guarantee a huge smile and a belly laugh that melts the heart.

Now a network of Rhizo kids across the country are extended family for Mindy and Stepdad Doug Lee.  For Jake and Jordyn’s dad, Jeff Cirner. And for their feisty “Gran”, Debbie Detmayer, who we’re convinced will be standing up for her Rhizo kids until her last breath.

Mindy speaks for them all when she says, “This is our life. Jake and Jordyn are our hearts. The Rhizo kids this is our life and this is every day. It’s so worth it.  They are our fighters. Our rock stars. I want to advocate not just for Jake and Jordyn but for all the Rhizo kids families who are fighting the good fight for their kids."

Celebrating kids like the real miracle gifts that they are.

"We don't take any of that for granted. We thank God that they are long term survivors," says Lee.

Survivors with a spirit that even a debilitating genetic disorder can’t snuff out.

Because love is winning in North Royalton.

Relentless, unwavering commitment to two kids whose lives count.

So it’s straight to #TheGoodStuff file with Rhizo kids and their families.

Families like Jake and Jordan’s who show us the joy that comes from living in the moment.

In gratitude.

Right here.

Right now.

Families who #SeeThePossible in going above and beyond to make sure the world knows the beauty that's within Rhizo kids as they spread awareness and work for a cure.

You can get tickets for their annual fundraiser “Rockin and Rolling Night at the Races” this Saturday Sept. 23. In Berea. Click on the events tab at  Rhizokidsohio.com 

© 2017 WKYC-TV


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