Local boy battles terminal spinal disease
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AMMON — A local boy suffering from a terminal illness was expected to live until he was 2 years old. Eli Price is now 3.5 years old, and his family continues to fight for his survival.
“I accept the diagnosis, but not his prognosis,” said Joseph Price, Eli’s father. “I don’t believe that we should just take him home to die.”
Eli was born in Germany in 2013 when Joseph was working for the military. To doctors, Eli seemed to be a normal and healthy baby.
“The moment that they laid him in Windy’s (Eli’s mother) chest after he was born, she felt like something wasn’t really quite right, but she couldn’t really pinpoint it,” Joseph said.
After a few weeks, Windy and Joseph noticed their baby boy wasn’t developing basic motor skills.
“When he wasn’t meeting those milestones, we started getting a little concerned and we went and talked to a doctor,” Joseph said. “Initially the German pediatrician said, ‘There’s nothing to be concerned about. He’s developing a little slow, (but) he should be fine,’ but weren’t so sure.”
Windy and Joseph weren’t sold, and continued to seek professional medical help for their son. When Eli was about 3 months old doctors discovered he had a rare terminal illness, spinal muscular atrophy, or SMA.
“The Germans told us, ‘Take him home. Love him while you can. He might make it a year,’” Joseph said.
SMA affects the motor nerve cells and the spinal cord. People suffering from SMA can lose the ability to walk, eat or breathe.
“It affects pretty much every muscle in his body,” Joseph said. “Eli will never sit up. He will never walk.”
Eventually Eli’s family made it back to the United States and got him the medical care he needed. Eli can’t sit up and lies in a stroller. He daily requires multiple machines that monitor his heart, supplement oxygen, and provides him food through a gastrostomy tube. Each day is a struggle, but the Prices say they do all they can to help Eli live a full life.
“We’re enjoying the time we have with Eli and we want to get him out to see the world. Wherever we can we take trips around here locally. That’s the great thing about living in Idaho Falls is that we’ve got good access to the Tetons to Yellowstone,” Joseph said.
To learn more about Eli’s condition and how you can help visit his Facebook page.