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Loss of baby son to genetic disorder leads family to launch foundation

Photo Credit: TIMES PHOTO: JONATHAN HOUSE - Dave and Shawna Randall, and their two sons Jace, 8, and Cade, 5, founded their own nonprofit group to raise money to fight spinal muscular atrophy, which took their son Cole's life in 2012.Above the front door of Shawna and Dave Randall’s Tigard home is a single word: Smile.

It’s a reminder for the couple and their two young sons Jace, 8, and Cade, 5, to find happiness through adversity.

And the Randalls have faced their share in the past few years.

The Randalls are the founders of the Cole Parker Randall Foundation, a nonprofit organization they launched earlier this year and named in honor of their son who died of spinal muscular atrophy in 2012.

SMA, a genetic disorder that attacks the spinal cord and brain stem, blocks messages to and from muscles, making movement and control of the head, neck, chest, abdomen, legs and arms difficult.

It’s a deadly disease, responsible for more deaths of children ages 2 and younger than any other genetic disorder, according to Boston Children’s Hospital. Statistics vary, but it’s estimated that 1 in 40 people are carriers of the genetic trait responsible for SMA. One in every 6,000 or 10,000 people are born with SMA every year.

Despite its prevalence, Shawna and Dave said it isn’t something most people are familiar with.

“We were baffled,” said Shawna, 37. “It was something we had never heard of. We didn’t know anyone who had ever heard of it, either.”

“Even with our experience after,” Dave added, “we have only met three or four people who have been affected by SMA.”

In January, the couple launched the foundation in the hopes of raising awareness of the disorder. The group is currently in the midst of its first fundraiser and is planning a golf tournament in Aloha on Sept. 27 to help fund research toward a cure for SMA.

Registration for the golf tournament is sold out, and the group is just shy of meeting its $40,000 fundraising goal.

“Our objective is to raise money to find a cure,” Dave Randall said. “It’s projected to be as close as two years away. We really want to be a part of that.”

Photo Credit: SUBMITTED PHOTO - Cole Parker Randall was 76 days old when he lost his battle with spinal muscular atrophy in 2012. His family is hosting a golf tournament Sept. 27 to raise money to find a cure.

Respond positively

Cole Randall was born August 27, 2012, and Shawna and Dave said he was a quiet, easy baby, after his two older brothers, Jace, now 8, and Cade, 5.

Cole’s lack of mobility and muscular control was at first attributed to being a late bloomer, Dave said. But shortly after Cole’s one month birthday he began to show serious symptoms, Shawna said. His breathing became rapid, and his heart rate skyrocketed.

Shawna took him to their pediatrician for an evaluation. They were there for only a few minutes before Shawna and Cole were racing across town in an ambulance for the pediatric intensive care unit at Randall Children’s Hospital at Legacy Emanuel.

It would be another week before he was diagnosed. By that time, he would lose much of his motor functions.

Cole died on Nov. 10, 2012. He was 76 days old.

“For us, for me especially, that first year (after he died), I was just trying to put one foot in front of the other,” Dave Randall said. “But as we reached the different anniversaries, like November, we both felt we needed to do something about this. We can’t go about things the way they always were. We wanted to respond positively and set an example for our kids.”

Dave, director of operations at Arnerich Massena investment advisory firm in Portland, and Shawna, who teaches psychology at Chemekta Community College, have no experience in fundraising or running a nonprofit, but both said it was something they had to do.

“It has been a real learning experience,” Dave said.

Tournamant is a beginning

Golfers will tee-off on Saturday, Sept. 27, for the foundation’s first big fundraiser, “Smiles for SMA” at The Reserve Vineyards and Golf Club in Aloha, followed by a dinner and auction.

Proceeds from the event will go to Cure SMA, an Illinois-based organization researching a cure.

“We had originally planned the event for them before we started the foundation, but then decided to branch out and form our own foundation for this area,” Shawna said. “Cure for SMA’s closest chapter is in Seattle, but I haven’t heard of another SMA organization in Oregon. There is not a real presence in the Northwest.”

The tournament’s name comes from Cole’s ability to find joy no matter how hard things got, Dave said.

“Even under the most difficult circumstances in the hospital, when he was fully intubated and had a feeding tube and assisted breathing, Cole would smile ear to ear when his brothers would walk in the room,” Dave said. “That is unusual for a child his age, let alone what he was going through at the time.”

The foundation hopes to put on one or two events a year, Dave said, which will go to benefit research for a cure and other organizations in the community.

“There are a lot of organizations that are really important to us, like Randall Children’s Hospital and Legacy Hospice, they were so fantastic,” Shawna said. “As awful as the experience was, the staff at Randall was amazing. It became like a family with those people.”

Dave agreed.

“We want to get involved with them — it’s a kind of way to stay connected to Cole, as well,” he said.

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