Two year old with rare disorder preps for out-of-state surgery
A child named Christian has a rare disorderPhoto: Video by ktnv.com
Las Vegas, NV (KTNV) -- Some see the glass half empty, others see it half full. But for a Valley family whose son is fighting a rare disorder, one of those perspectives is helping prove medical odds wrong. Action News anchor Beth Fisher introduces you to Christian.
"They're not even supposed to make it out of the delivery room," explained Sareta McRann, Christian's mom.
But Christian isn't following statistics, he's breaking them. The two year old suffers from Thanatophoric Dysplasia, a disorder that causes abnormalities of the skeletal system.
"The fact that now he's doing more motor development. We don't usually see with these kids, that's actually astonishing," explained Ryan Yoshikawa, a Nurse Practitioner at Children's Lung Specialists.
Despite the tubes, mom Sareta says Christian has temper tantrums you'd expect from any two year old.
"He's quite the character, he gets mad," said Sareta.
When mom tells him to be quiet, he'll only get louder. Perhaps his noises are to cover the sound of the ventilator which is constantly helping him breathe. A nurse helps the family about 60 hours a week but eating is something Christian is trying to take control of.
Christian's nurse practitioner says about one in 50,000 kids is born with this ailment. Thanks to social networking, Sareta found another mom across the country whose son suffers from the same thing. It was then she learn about a surgery that could offer more hope.
"Without the surgery we can't pursue physical therapies and other things to help him compress," said Sareta.
She says the decompression surgery will help stabilize his head movement. To get it, Christian is going to ride cross country to a hospital in Delaware where Sareta says that other little boy is thriving after getting the same surgery.
"It's nerve wracking. I still get really excited about it because I can see it's hopefully to see him grow later," said Sareta.
In the back of her mind she can't help but think about the astronomical bill that could come if Medicaid doesn't cover the procedure. The breakdown from Alfred L. Dupont Hospital in Delaware shows it could be about $40,000, that's with a deep discount from Dupont.
"For a kid who has this that's lived beyond the age of 1, that's in itself is a miracle," said Ryan.
She's hoping for another miracle and plans to share Christian's story on the road thanks to a car wrap a friend donated.
"The possibilities are endless," said Sareta.
The family is planning to leave next week to start the drive to Delaware. We're going to keep in touch and keep you posted on Christian's fighting spirit.
Click here to visit Christian's Facebook page
The family is accepting donations through PayPal. Just search the email address: email@example.com