Charlie’s big snow day: Kent youngster battling Li-Fraumeni Syndrome, brain cancer, gets his first-ever sled ride

For many youngsters in Kent, Earthworks Park Feb. 24 was the place to be.

It was the day of the big snow, and the park’s hilly topography was perfect for high-speed runs, with a nice big pool of mud at the bottom.

Charlie Edgmon, 7, was one of those kids feeling the need for speed. The only difference being that he was maybe even more excited than the rest of them.

It was his first time ever riding a sled.

Bundled against the cold, the Scenic Hill first grader and twin siblings Izzaiah and Savannah, 4, spent the afternoon running and sliding at the park, along with mom Carmin Edgmon.

Charlie, ever exuberant, ran through the snow playing chase, and occasionally rolling off the sled. But if you were looking closely, you might start to notice a slight limp.

It’s a sign of a bigger issue – and part of the reason why up until now, Charlie hasn’t had the usual opportunities most 7-year-olds get with a sled.

Charlie is fighting brain cancer.

“He’s had seven surgeries total,” said Carmin, noting Charlie’s cancer was diagnosed when he was just 2 months old.

Charlie has a cancer called Choroid Plexus Carcinoma. It’s an aggressive, rare cancer that most often occurs in children. It’s associated with many symptoms, among them seizures, severe headaches, nausea and excess fluid on the brain. It’s also very hard to beat, meaning the prognosis is not good for those diagnosed with it.

Charlie’s illness, which kept him hospitalized for much of his first year of life, also has another component. It’s one that has implications for Carmin, outside of being Charlie’s mom and main caregiver.

Charlie’s cancer is frequently associated with another health condition called Li-Fraumeni Syndrome. It is a hereditary disorder that greatly increases the risk of developing cancer, thanks to a gene that doesn’t work right, and can’t turn off the growth of cells.

In the U.S. an estimated 400 people from 64 families have this disorder.

Carmin and Charlie are two of them.

“Me and Charlie have the condition – only I don’t have cancer yet,” said Carmin, who learned she had the faulty gene for Li-Fraumeni after doctors tested Charlie for it.

For Carmin, the diagnosis explained a few things.

Her dad died from cancer when he was 39, and his mother – her grandmother – also died young from cancer.

Carmin is realistic about her life, given what she has been told and what she has seen.

“I’ve been told I won’t see 50,” she said, matter of factly, as Charlie and his siblings ran through the snow, laughing with delight.

Izzaiah and Savannah don’t have the faulty version of the gene. Carmin calls them her miracle children.

In talking to Carmin, it’s also possible to see another miracle – the gift of time.

Early into Charlie’s illness, doctors measured his life expectancy a week at a time.

“We’d live for that week,” Carmin said, noting the first two years were awful because of the uncertainty.

“We didn’t know how much time we had.”

Today, Carmin is taking things one day at a time, with Charlie and with their lives as a family. She has a job and goes to Highline Community College, where she’s working on an associate’s degree to become a chemical-dependency counselor. On her own since 13, she’s hoping the hard lessons she learned growing up will help her to connect with troubled teens as a counselor.

“If I can reach one kid, then maybe the chaos was worth it,” she said.

And then there is the gift of the present.

She is the mother of a sweet, happy boy who frequently runs over to give her hugs – but like any kid, who’ll get in a snit when his younger siblings don’t do what he wants.

And after recovering from the suppressed immunities that chemotherapy used to give him, Charlie is starting to feel better.

Better enough, in fact, to grab a sled and hit the slopes.

So it’s no surprise Carmin was laughing on Kent’s big snow day.

It was a special day, indeed.