Tigard family fighting to find cure for SMA in son's honor - KPTV - FOX 12

Tigard family fighting to find cure for SMA in son's honor

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TIGARD, OR (KPTV) -

Three years ago, a Tigard couple lost their newborn son to a devastating neuromuscular disease.

But instead of dwelling on their grief, they started a foundation in his honor. Now, they’re making history with awareness and the money they’re raising to find a cure.
               
“He had the uncanny ability to smile under the most severe circumstances," said Dave Randall, sitting right under a black and white photo of his children.
 
In August 2012, Dave and his wife Shawna welcomed a third boy into their happy family—little Cole Parker. Cole was an easy baby and everything seemed normal until he was one month old. Shawna can’t forget that day.
 
“He started having some breathing difficulties so I took him into the pediatrician and they had us in an ambulance in five minutes," she said. 
 
After 15 days in the hospital, doctors finally diagnosed Cole with Spinal Muscular Atrophy, or SMA. It’s a disease that destroys the nervous systems with symptoms similar to ALS. Dave says nothing prepared them for the news.
 
“When Cole was diagnosed with Spinal Muscular Atrophy, we were told there’s no cure for it and there’s basically nothing you can do about it," he said. 
 
The Randalls brought Cole home to live out his last days with them and his big brothers.At 11 weeks old, Cole died in their arms.
 
A year later, Dave and Shawna decided to take action.
 
“After all the first anniversaries, we just kind of went, this is crazy," said Shawna. “How do people not know about this? We have to do something.”
 
They started the Cole Parker Randall foundation – the first of its kind for SMA in Oregon. Last year, they held their first annual charity golf tournament and now they’re working to offer financial support for families dealing with SMA.
 
“A lot of these families have needs that are not being covered by insurance," said Shawna. “So we’re starting, just in the beginning stages, of starting a community grant.”
 
In just three years, the foundation has raised more than $100,000, a feat that helped put Dave on the Portland Business Journal’s “Top 40 under 40” list for 2015.
 
Despite their success with the foundation, Dave and Shawna are still grieving and there are days they don’t want to talk or even think about SMA. But they say the sweet spirit that still comes through in Cole’s pictures keeps them going.
               
“I think we really look at it as an opportunity to share Cole’s story and that’s how his legacy or presence lives on," said Dave.

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