SAND SPRINGS, Okla. - Jana Gundy remembers the day her then six-month old son Kyle went to the doctor for a stomachache, but was diagnosed with a terminal illness.
"I mean, when you’re looking at your baby and they say he’s going to die, that’s a really hard thing to take when you don’t know going into it what’s going to happen," she said.
Kyle is now 12 and lives off of machines helping him breathe, a chair allowing him to get around and a mother dedicated to her son.
“He pretty much told us that Kyle had SMA and it was terminal, and there was nothing we could do. Just take him home and love him," she said.
According to the Muscular Dystrophy Association, SMA or Spinal Muscular Atrophy is a genetic disease affecting the part of the nervous system that controls voluntary muscle movement.
The FDA calls it one of the most common killers of infants.
“I didn’t let that stop me from figuring out how to take care of him. I didn’t take no for an answer," Gundy said.
In January the FDA approved a treatment for infants that's able to cure them with early detection. And while it won't cure Kyle, it will keep him from getting worse and possibly allow him to improve.
Gundy says Kyle is already approved to receive the treatment, but she can't find a local doctor willing to administer it. So she plans to travel to someone who will.
“Since it’s already approved for Kyle I’m not in the mindset to keep waiting for them to be ready," she said.
Treatments are roughly $150,000 per shot not including the cost of the procedure.
And Gundy says the first year of treatment Kyle will need six to seven shots costing them roughly $750,000 before surgery, and the costs of Kyle's current treatments keeping him alive.
But Gundy says the last thing her family wants is pity. It bothers her when people say they're sorry for her.
“I do get upset by that because I never want him to question why in the world would they be telling my mom sorry because of me?”
She says if there's anything she's learned it's that God gives us the grace to handle the life he's chosen for us.
“I don’t dwell on what could happen. I just dwell on each day that he’s happy, and we enjoy him and enjoy our lives.”
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