VANCOUVER, Wash. (KOIN) — Weeks after their story became a topic of discussion around the globe, Michelle Moon and her husband Steve Snow took time to thank people who helped promote awareness for their daughter’s neuromuscular disease.
Julianna Snow is “a really happy girl” who often acts like a typical girl. “I would say 99% of the time she’s just a 5-year-old. She likes to play,” Moon told KOIN 6 News.
But the Vancouver family made headlines around the world after their story was told in a series of reports on CNN titled, “Heaven over hospital.”
Julianna was diagnosed with Charcot-Marie Tooth, “the most commonly inherited peripheral neuropathy [that] affects an estimated 2.8 million people.”
About 1 in 2500 people are affected by CMT. Julianna has a very severe form, and the family doesn’t know what the gene mutation is.
“We can’t even talk about treatment before we have a cause,” she said.
Her husband also has CMT but is completely asymptomatic. “He was a military fighter pilot and we wouldn’t even have known he had it had it not been for my daughter,” she said. “Something obviously, something is different in hers.”
Julianna’s CMT began displaying itself through delayed motor skills, Moon said. It began to affect her ability to breathe and swallow and she now needs support to breathe.
“Last year was really, really difficult. She spent a lot of time in the ICU with respiratory issues. For her, a trivial runny nose turns into something much worse,” she said.
Michelle Moon blogs about the experiences with Julianna. CNN saw a post where Julianna’s parents talked with her about what she wanted if she got sick again — to go to the hospital or stay at home.
“I felt I wanted to share and ultimately CNN picked it up,” she told KOIN 6 News.
Moon said she is surprised by Julianna’s maturity, and said, “She’s the one who brings it up. I don’t, most of the time.”
Moon, who is also a neurologist, spoke with KOIN 6 News outside Natural Body Works in Vancouver, one of the businesses raising money for the CMTA to support research into the disease.
“We do a lot of charitable causes and this one just followed my heart,” said Shanna Arno of Natural Body Works.
A donation jar inside Natural Body Works states Julianna is an inspiration and living example of joy in the face of a debilitating disease. The money raised during November will be donated to the CMTA.
Other businesses participating include Niche wine bar and art gallery and Cake Happy in Camas.
“It’s truly about the quality of life, and I think if you look at this year compared to what it was like before when we weren’t focused on that, it’s night and day,” Moon said.For more information:CMTA