Local businesses reach out to support family of girl facing term - KPTV - FOX 12

Local businesses reach out to support family of girl facing terminal illness

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PORTLAND, OR (KPTV) -

Some local businesses are stepping up to help the family of a local girl, whose health battle made news around the world.

Julianna Snow, a 5-year-old girl from Washougal, faces a terminal illness, called Charcot-Marie-Tooth.

Her father Steve Snow noted that like many girls, Julianna likes Disney princesses and singing “Let It Go,” even with her illness.

“I would say, 95 percent of the time, she's just a five year old. She likes to play,” he said.

CMT is a disease many have never heard of, a neurological condition that has taken her ability to walk and breathe on her own.

“For her, a trivial runny nose turns into something much worse,” her mother Michelle Moon explained. “Last year was really difficult. She spent a lot of time in the ICU with respiratory issues.”

Moon and Snow know that the next time their daughter gets a cold or infection, her body may not be able to fight it off.

Julianna’s doctors gave her parents an impossible decision. They could allow Julianna to die in the comfort of her home, or go back to the hospital where the uncomfortable treatments likely wouldn't save her.

Moon and Snow decided to ask Julianna her choice.

“I think when parents face end of life decisions and conversations with their children, of course it's awful, no one wants to think about it but I think the sad reality is that there are terminal diseases, some children have them and I think these conversations are important,” Moon said.

Julianna told her parents that she would rather go to heaven than back to the hospital, and her doctors supported the decision.

The family decided to share Julianna’s story, and it made news around the world.

Some of that attention came from the CMTA, the leading organization raising money for research into Julianna’s disease.

They donated $6,000 for next-generation gene testing on Julianna to identify the illusive gene causing her condition.

“We may have an answer in the next few weeks,” Moon said. “We can't even talk about treatment before we have a cause.”

The family did say, though, that they want to pay back that donation tenfold.

Some businesses in the Vancouver area have joined their mission to raise $60,000 for the CMTA.

While it's a difficult time for her parents, they're also filled with gratitude for the community's support.

For more details on their fundraising efforts, visit their site at Juliannayuri.com.

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