Infant’s life, smile brings awareness to rare disease

Tigard family started Cole Parker Randall Foundation in their son's memory

Shawna and Dave Randall with their children, including Cole in an undated photo (Courtesy)

TIGARD, Ore. (KOIN) — A local family is honoring the memory of their little boy with a heartfelt mission to help other families.

Not many people have heard of spinal muscular atrophy type 1, a rare disease that affects infants. But the Randalls want to change that.

When Shawna and Dave Randall think of their son Cole, they think of his smile.

Shawna and Dave Randall look at pictures of their children, including Cole, September 14, 2016 (KOIN)
Shawna and Dave Randall look at pictures of their children, including Cole, September 14, 2016 (KOIN)

“The doctors didn’t believe us when we said he smiled at 4 weeks old,” Shawna said. “No, babies don’t smile that early. It’s gas, right? No, he had a great smile.”

And the family said he smiled no matter what he was facing.

Cole was born in August 2012. Two months later, he was diagnosed with SMA.

“It was shocking that there’s a disease out there that there’s no treatment, no cure for it,” Shawna said. “The life expectancy for your child is a 2 years maximum.”

Cole lived 76 precious days.

“So basically, your brain is fine and your muscles are fine, but the communication pathway between them does not work,” Shawna explained. “So, you’re virtually like paralyzed, and then you just get weaker and weaker muscles, including muscles to breathe and muscles to swallow and all that.”

They started the Cole Parker Randall Foundation in their son’s honor as a way to raise thousands of dollars for research and to help raise awareness about SMA.

“We could wallow in it, or we could try and do something about it and make a difference,” Dave said. “And we’ve probably done both.”

They’ve supported some promising research for a possible treatment with OHSU. The family is also pushing for a cure as they hold their little guy close in their hearts.

On Saturday, the Cole Parker Randall Foundation held a golf tournament and auction to raise money for SMA research. In a note to KOIN 6 News, Shawna said “We did reach our fundraising goal for this year, despite the terrible weather Saturday and have now raised over $260,000 in three years!”

Comments are closed.