After 3 weeks of fighting a deadly respiratory virus, JD opened his eyes and gave a determined look to his mother, Rhonda. 4-month old JD had never spoken and never would. However, something in his eyes spoke volumes that day. With the odds stacked against him, JD was letting his mother know that he was a survivor. He wasn’t giving up.
Two months prior, Rhonda Spain knew something was wrong with her son, JD. He couldn’t lift his head and often choked when feeding. The doctor quickly diagnosed JD with hydrocephalus and told Rhonda there was a possibility of a neuromuscular disease as well.
The progressive hydrocephalus was causing an excess of fluid in JD’s brain. Without surgery to relieve the pressure, it would have led to his death. The real devastating news, however, came 7 days after the successful shunting procedure. JD was diagnosed with spinal muscular atrophy (SMA) type 1.
SMA robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breath.
Doctors told Rhonda that JD was the first documented case of an infant with both hydrocephalus and SMA. Combine that with the deadly respiratory virus and the outcome looked grim. Rhonda was told JD likely would not survive to see the outside of the hospital again. Even if he did, he would not live to see his second birthday.
JD pulled through, though, and made it his mission to prove doctors wrong time and time again. For her part, Rhonda wouldn’t accept a death sentence for her son either. She explains that, “Every time a doctor said he could not or never would, I made sure he did or at least tried.”
JD is now 19 years old, surprising all the experts. They said he would never communicate and yet he communicates clearly with “yes” and “no” answers using his eyes. They said he would travel only by ambulance to and from the hospital. And yet JD has been all around Texas, to the Aquarium, movie theatre and plans to some day see the Grand Canyon.
While Rhonda refuses to keep her son locked up at home, getting JD out and about has been taking its toll over the past 8 years. Any trip outside the home has turned into a marathon event. First they unplug JD’s life support from a permanent power supply. Rhonda manually pumps air into his lungs using an ambu bag while they connect him to a temporary power supply which is only good for 45 minutes.
Next, their Honda Element is transformed into a makeshift ADA vehicle by removing multiple seats. The lifting of JD alone presents its own dangers. At least 3 people must be present to lift JD and all his equipment into the vehicle. The whole process can take up to an hour each way. “The stress of the situation,” Rhonda explains, “is enough to give me a headache every time we leave, but not enough to keep us at home.”
As JD grew up, so did the size and scope of his needs. We’ve purchased a lot of ADA accessible vans this year, 15 to be exact. JD has a big family and even your standard ADA Van would not be big enough to accommodate he and the family, especially given that JD must lay flat during the trip. A big word began circulating here at Chive Charities,Freightliner. Can we do that? We should totally get a Freightliner for JD.
And we did just that.
We’re proud to announce that Chive Nation is stepping up in a big way. A Chive Charities grant of $99,000 from the Chive Fund is paying for an ADA Freightliner van with life support. The van solves a number of issues for JD’s family. The rear wheelchair lift will make it safe to load JD into the vehicle. In addition to having plenty of room for JD to lay flat in his wheelchair, the van provides constant electricity to JD’s life support equipment. The family can now travel safely together.
That trip to the Grand Canyon is now finally possible.