New year, new hope for girl battling rare blood disorder

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GRAND RAPIDS, Mich. — A West Michigan girl has endured more than what many deal with in a lifetime.  Lilly Vanden Bosch,10, was diagnosed with a rare blood disorder that put her in the hospital for weeks, but a bone marrow match thousands of miles away is bringing new hope to Lilly and her family.

It's called Aplastic Anemia and it effects around 2 in every million kids. The disorder can cause a lot of problems if left untreated.

On Friday,  FOX 17 talked to Dr. Uli Duffner who specializes in pediatric bone marrow transplants at Helen DeVos Children's Hospital in Grand Rapids.

"With that disease, you are not making enough red blood cells," said Dr. Duffner. "You are not making enough platelets [and] you are at risk for severe bleeding."

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The disease also heightens Lilly's risk for life-threatening infections.

"She acts like a normal kid, but she's got a lot going on inside," said Lilly's mom, Meg.

It all started around two years ago, when family members noticed abnormal bruising on Lilly's legs two years ago. Lilly said she had around 62 bruises, along with a bloody nose that lasted most of the day.

Lilly's dad, Tom Vanden Bosch, reflected on the past two years since Lilly's diagnosis.

"I wouldn't wish it on my worst enemy," said Tom. "It's been tremendously difficult."

Some good news came following several tests and suppressant treatments as Lilly's health began to improve.  It's something that didn't last long. first day of 4th grade

"We thought she had it good, until she relapsed," said Meg.

Finding a bone marrow transplant was the next step for the family, but it was going to be tricky finding a perfect match.

Lilly spent 50 days straight in the hospital and worries plagued the family as they anxiously waited for a blood marrow donor.

In November 2015, some of those worries were wiped away as a blood marrow donor, matching Lilly's was discovered in Europe, thousands of miles away.

"They’re saving my life right now," said Lilly.

She's fighting Aplastic Anemia like a champion with the added relief of a new and improved immune system.

"Right now, I'm just happy to be home," Lilly said.

Because Lilly's risk for infection is extremely high, she will not be able to attend school until Fall of 2016.

Lilly's school, Saint Stanislaus is holding a bone marrow drive February, 25th from 1-5 for those who may want to donate.

You can watch Lilly's emotional homecoming by clicking the link to her Facebook page.

The Vanden Bosch's are hoping this story urges more people to sign up on the bone marrow registry. It's as easy as a mouth swab, you'll get placed in their files and you could save someones life.

If you would like to find out how you can become a bone marrow donor click here for more information.

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