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Lynnwood teen with rare bone disease dedicates herself to helping others

Faith Murray has CRMO, a painful disease that strikes one in a million people

LYNNWOOD, Wash. — Most people who swim anchor for a winning relay team savor the moment they finish the race.

But 15-year-old Faith Murray recalls something that happened several minutes after she helped the Lynnwood Royals finish first in the NW Districts. 

When the other team came over to congratulate her and saw her out of the pool, they couldn't believe their eyes.

"I was in my wheelchair,” she said, laughing. “You can't define people for what they look like."

Every time Faith swims, it’s an exercise in sheer willpower. She suffers from a chronic, painful disease that causes her bones to become inflamed.

“Faith’s disease is called recurrent multifocal osteomyelitis, or CRMO,” said Libby Murray, Faith’s mother. "When she was four she was completely healthy, and then she woke up with two fully collapsed vertebrae."

One in a million people suffer from CRMO. The disease ebbs and flows – some days, Faith is able to manage the pain and walk. Other days, it’s excruciating and she needs a wheelchair for mobility.

"It's easy to look at her beautiful smile and her composure and think, ‘Wow, this girl has a great life.’ But what they don't see is how hard things can be,” Libby said.

Since CRMO is so rare, treatment options are limited and Faith has to fight through the pain. She's learned to hide it well.

"It is hard. That's the truth, to be honest. There are some days that you don't want to get out of bed,” she said. "But, you have to look at the good. You have to see that your family is there, you have to see that you have friends, you have to see that there's blue-sky in the morning. You just have to stay strong and you have to find things that are going to bring you joy." 

Rather than letting the pain draw her inward, Faith made a choice to start reaching out, through service.

She’s collected items for food drives, spent afternoons visiting with seniors, and made multiple visits to elementary school classrooms with an “idea board” where the kids can generate ways to change the world.

"They'll come up with these really profound ideas where I'm like, ‘Yes, you can totally do that, age does not matter for you guys, if you set your mind to it, you can do anything,’" Faith said.

She also started a teen group called H.O.P.E. that donates to different charities once a month.

"I think the thing that's she's taught me the most is that human beings can be empowered by taking action,” Libby said.

To that end, Libby also took action - launching the first non-profit in the world dedicated to CRMO research and education.

Someday, it may help find a cure.

In the meantime, Faith will keep finding new ways to be one-in-a-million - regardless of her disease.

"We get so nitpicky about the littlest things and I think all we really need is to love each other," she said.

A walk-a-thon in support of CRMO research will take place on Oct. 26. Visit their website to register.

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