Parents hold 'Unicorn Walk' to honor daughter who chose heaven o - KPTV - FOX 12

Parents hold 'Unicorn Walk' to honor daughter who chose heaven over the hospital

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The parents of Julianna Snow honored her Saturday with a Unicorn Walk to raise awareness of CMT, the disease that claimed the 5-year-old’s life. (KPTV) The parents of Julianna Snow honored her Saturday with a Unicorn Walk to raise awareness of CMT, the disease that claimed the 5-year-old’s life. (KPTV)
PORTLAND, OR (KPTV) -

It was a difficult conversation between a local 5-year-old and her parents that made national headlines.

This weekend several people got together for a "Unicorn Walk" in Vancouver to commemorate the life of Julianna Snow, and to raise awareness for the disease that took her life.

"Today is about celebrating. She loved all this stuff—unicorns, pink and anything magical," Julianna Snow’s mother Michelle Moon said.

Magical is a perfect way describe Saturday’s Unicorn Walk at Columbia Park, put on by a mother who still thinks about what her little girl would've wanted.

“She would just smile,” Moon recalled. “I've never worn anything like this in my life, but I think she would like it."

Dozens of unicorn-clad people showed up to raise money and awareness of Charcot Marie Tooth Disorder, also known as CMT. It’s a neuromuscular disease that causes severe nerve damage, and Julianna died from the condition in June.

"We're partnering with the CMTA, which is the organization that raises funds and awareness for this awful disease," Moon said.

Julianna's parents said their daughter had very little movement below her shoulders, and could barely swallow. Doctors say there is no known cure.

“I have a lot of issues in my hands, weakness,” CMT patient Ori Bash said. “My handwriting is really bad, I have a hard time opening jars. It's progressive so it gets worse over time.”

Bash travels around the country to various CMT fundraisers with one goal in mind, finding at least some type of treatment.

"We're interested in finding the treatment for this disease, there's nothing out there,” he said. “This disease has been around since the late 1800's and there's nothing."

For Julianna, everyday life became so painful that she told her parents she would rather go to heaven than go back to the hospital.

Just like the days leading up to her death were difficult for Julianna’s family, the last four months since her passing have not been easy. But they're determined to keep her memory and fighting spirit alive.

"Since she's been gone I think of what would make her proud, and I think this would make her proud,” Moon said.

September was designated CMT Awareness Month in Oregon by Governor Kate Brown. For more information on CMT, visit CMTAusa.org.

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