Fundraiser Helps Bedford Child With Rare Blood Disease - WSET.com - ABC13

Fundraiser Helps Bedford Child With Rare Blood Disease

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Lynchburg, VA - It was a diagnosis that started with a summer sports physical check-up. Tests showed something very abnormal inside a little girl's body. And now, Bedford resident Kaylin Martin, 12, is fighting for her life.

At just 11-years-old Kaylin Martin became one in a million.

"The chance of aplastic anemia was one in a million. It was the worst case prognosis," said Sandra Martin, Kaylin's mom.

As a nurse, Sandra feared the worst after tests came back negative for leukemia.

Just days later, her daughter's bone marrow biopsy came back. Kaylin Martin was diagnosed with a rare blood disease called aplastic anemia.

"I just had a bad feeling that it was going to be a devastating diagnosis," said Sandra Martin.

Tests showed what had caused the aplastic anemia: a rare blood disease called paroxysmal nocturnal hemoglobinuria or PNH. Kaylin's mom says she's only the third child in the state ever diagnosed with it.

"She was fine and then all of a sudden we're faced with she needs a transplant and that's her only hope," said Sandra Martin.

After her diagnoses, Kaylin needed a bone marrow transplant to survive, and the odds weren't in her favor.

"Out of about a million people on the registry, she only had one person that matched her and it was not even a perfect match," said Sandra Martin.

Kaylin finally got her transplant last December. She's also had more than 200 blood transfusions so the bills started to add up. That's when some of Sandra's co-workers decided to host a fundraiser event at Snowflex on Saturday.

"They're thinking about their life, and what to do next with surgery and what to do next for Kaylin,and Kaylin just wants to be a normal little girl," said event organizer Annette Sherwood.

The diseases have taken a toll on Kaylin's body. She's fighting a lung infection and only 1/3 of her kidneys are functioning. The odds are stacked against her, but Kaylin's mom doesn't see it that way.

"There's a lot of families we went through transplant with that their children did not survive, and I'm so grateful that we have her," said Sandra Martin.

Kaylin Martin's next surgery is scheduled for Sept. 12th at Duke University Hospital. Doctors will operate on her lungs to help with infection. Organizers of Saturday's event hope to raise $10,000 to help with those bills.

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