- An Idaho family is seeking community support for their son's cerebral palsy treatment.
- Chelsey Davids hopes stem cell therapy at the Stem Cell Institute of Panama will help her son Clair.
- The $15,000 treatment is not FDA-approved and isn't covered by Medicaid.
SODA SPRINGS — What began as a routine prenatal appointment turned into a life-changing emergency for a Soda Springs family — and now, two years later, they've launched a GoFundMe* to help pay for a potential treatment for their son's cerebral palsy.
"You never think something like this will happen to you," mother Chelsey Davids said. "And then it does. I just wish I could take away the challenges that he faces every day. And then I wish that I could just make things easy for him."
This all started when Chelsey went to see her doctor for a routine appointment at 37 weeks' gestation. She expressed concern that her unborn son, Clair, wasn't moving. Medical staff found that Clair was only showing a heartbeat.
They performed an emergency C-section, and Clair was immediately rushed to the neonatal intensive care unit. Chelsey only got a peek of him before he was gone. Weighing 5 pounds, he stayed in the NICU for around 13 days.
While he was there, a neonatal neurologist informed Chelsey and her husband, Cache, that Clair had suffered brain damage. They warned it could be as serious as cerebral palsy or as minor as a learning delay.
More than six months later, he was officially diagnosed with Spastic Quadriplegic Cerebral Palsy, meaning the ailment affected his whole body.
As Chelsey began researching treatments for cerebral palsy, she came across the Stem Cell Institute of Panama. She said they conduct additional testing of stem cells and identify six stem cells that help regenerate brain tissue the most. Of note, the treatment is not currently approved by the FDA.
"Kids with cerebral palsy, they have damaged myelin, damaged brain tissue, damaged pathways," Chelsey said. "They've actually found with stem cells that they've been able to reestablish some of those pathways and actually help somewhat heal the brain tissue and help the myelination process kick into overdrive."
Chelsey said the institute has already approved Clair for treatment, and they're set to tentatively go to Panama in early February. The only issue is that Medicaid does not cover the treatment. Therefore, every $15,000 treatment must be paid out of pocket.
Chelsey described her son as goofy. She said he's recently finished intensive physical therapy sessions, and as they were driving back and forth from Soda Springs to Idaho Falls, he'd do little sit-ups and giggle like he's saying, "Did you see that, Mom?"
She said Clair also has his own language with his father. They click their tongues at each other.
"He thinks it's the funniest thing ever, and I think that he knows that other people enjoy listening to him do that, too," Chelsey said. "That was a huge milestone for him to figure out his tongue placement and how to make that noise."
Chelsey said one day she hopes to be able to sit down with Clair and have a conversation as simple as how his day is going.
"We've overcome it as well as we have because of our medical staff, because of our family, and because of our friends," Chelsey said.
*KSL.com does not assure that the money deposited into the account will be applied for the benefit of the persons named as beneficiaries. If you are considering a deposit to the account, you should consult your own advisers and otherwise proceed at your own risk.
