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Mother who once raced the Gold Nugget while 30 weeks pregnant will race again with her son's memory in her heart

The first time Holly Weiss-Racine raced the Alaska Women's Gold Nugget Triathlon on Team Wesley, it was 2013 and she was 30 weeks pregnant with her son, Wesley.

On Sunday, Weiss-Racine will race on Team Wesley once again. Only this time, Wesley won't be in her belly. He'll be in her heart and in her thoughts, and his name will be written on her arm, inside a heart drawn with a black Sharpie.

Wesley Racine was 2 years old when he died in his sleep four days before Christmas last year. He'd had a cold the day before but was otherwise fine. Doctors were unable to explain why he died.

"The medical examiner couldn't find anything wrong with him," Weiss-Racine said.

Wesley's death was labeled a "sudden unexplained death in childhood," something similar to sudden infant death syndrome, except it strikes children over the age of 1 and it is far more rare.

"We didn't know this existed," Weiss-Racine said. "Since it happened I've met so many other people who didn't know it existed.

"Getting the word out there feels so important."

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Three years ago, Weiss-Racine and another triathlete, Holly Fisk, were both in their third trimester when they did the race and became known as "the Pregnant Hollys."

Last month, Weiss-Racine decided to share Wesley's story on the Facebook page for the Gold Nugget Triathlon, an all-female race famous for a camaraderie that welcomes racers of all abilities and body shapes.

"A lot of people in the Gold Nugget community know me and they know Wesley because of the Pregnant Hollys story," Weiss-Racine said. She knew it was likely someone would bring it up on Sunday, so the Facebook post was intended in part to get the news out before race day.

She also wanted to raise awareness about SUDC and perhaps do a little fundraising for the SUDC Foundation.

"I just felt it was important to share it with this community," she said. "They were really comforting and supporting when I did the race with him, and I knew they would be really comforting and supporting now.

"It's a group of moms, and what better place to start raising awareness?"

That's how Team Wesley came to be. About 20 of Weiss-Racine's friends signed up to be members of Team Wesley, and based on feedback Weiss-Racine has gotten from her Facebook post, many more are expected to honor Wesley by writing his name on their arm and drawing a heart around it. Weiss-Racine said she'll leave a box of Sharpies where triathletes get their bib numbers written on their arm and leg for anyone who wants to join the crowd.

Wesley was discovered dead in his bed on the morning of Dec. 21. His already-wrapped Christmas presents stayed wrapped and were stowed in a box in the garage.

About a year earlier, Weiss-Racine, a geologist for the state, had started a blog to chronicle the adventures of her family -- her husband Nick Racine; her daughter Marin, now 6; and little Wesley, forever 2.

Photos show the family cutting down a Christmas tree, exploring Portage Glacier, harvesting the family garden. Scroll through it and you'll find dozens of images of Marin and Wesley, their faces filled with wonder and joy.

On Jan. 8, about three weeks after Wesley died, Weiss-Racine resumed blogging.

"I have so much to say," she wrote. "But, I don't know where to start. Just like life right now. I don't know what I'm doing. At any moment of the day, I just don't know anything. What do we do with his crib? What do we do with his potty, and high chair, and drawers full of dinosaur shirts? I haven't changed a diaper or put on his little socks in 17 long days - I miss your little feet.''

Sudden unexplained death in childhood is a diagnosis of exclusion, one reached when everything else has been ruled out. According to the Centers for Disease Control and Prevention, 343 people ages 1-19 died from it in 2014. Of those 343, 202 were children ages 1-4.

In the year before he died, Wesley had two febrile seizures: one in January 2015 and another in October, Weiss-Racine said. Febrile seizures are associated with fevers, commonly occur in children ages 1-5 and "are usually harmless and typically don't indicate an ongoing problem," according to the Mayo Clinic.

Weiss-Racine said the State Medical Examiner Office told Wesley's family that Wesley didn't suffer a seizure-related suffocation death. Death was "almost instantaneous," the family was told, news that inspired a Jan. 16 blog post by Weiss-Racine.

"(W)e can hope beyond all hope there was no suffering," she wrote. "The fact that my baby could pass away right through the wall, 10 feet from my head will haunt me forever. I thought I had mom super powers; I thought we could tell when our children needed us. How did I not know?"

According to the SUDC Foundation, there are no recorded instances of a family losing more than one child to SUDC. But that is little comfort to Holly and Nick.

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In the first several weeks after Wesley's death, Marin slept in her parents' bedroom. She's back in her own room now -- by her own choice -- but her parents are still haunted by worries.

"Because the cause of SUDC is unknown, there is no possible way to prevent it, so it can happen to anybody. And we don't know if it can happen to our daughter," Weiss-Racine said, her voice faltering, "because we don't know if there's a genetic disorder or what the risks are."

Holly and Nick hope they can help find solve the mystery that is sudden unexplained death in children. DNA samples from both parents and Wesley are being used in a New York University/Mayo Clinic research study on SUDC.

Four and a half months after Wesley's death, Weiss-Racine said she is "as OK as can be expected."

"It's so hard still," she said. "It's really hard to believe this is forever."

Last Sunday was a particularly difficult one because it was Mother's Day. This Sunday could be a hard one too.

In 2013, Weiss-Racine raced the Gold Nugget while still carrying Wesley in her womb. In subsequent races, Wesley and the rest of the family were there to greet her at the finish line. She's not sure what to expect for her first race without Wesley.

"That's something I've thought about a lot, you know?" she said.

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But Weiss-Racine is eager to do the race again, to reunite with the Gold Nugget community and to perhaps do a little advocacy.

"It's really important to raise awareness for the funding of additional research," she said, "and to reach out to other parents who don't know that SUDC exists."

Knowing about it won't help those parents prevent it, she acknowledged. But it might still make a difference.

"The best benefit (of knowing) is cherishing every moment with their children," she said, "because you just don't know."

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