(CNN) – There are 14 thousand people in the U.S. waiting for a bone marrow transplant. Three siblings in Ohio have all just been added to that list because of a rare blood disorder.
As the family waits for the transplants, they hope their story will help shine a light on the importance of the donor registry.
From the time Ava was a baby, she had a lot of illnesses, ear infections and colds, but this year– something more serious.
“She started getting infections every time she would fall and get a scrape,” said mother Alicia Lagenhop.
Doctors at Cincinnati Children’s Hospital would diagnose her with a potentially fatal blood disorder.
“Leukocyte Adhesion Deficiency Type 1. It’s extremely rare and I guess we’re both carriers,” Alicia said.
Ava needs a bone marrow transplant.
Olivia was tested as a possible donor– but it turned out she has the same genetic disorder.
“We’re kind of in shock, kind of feel like we’re living someone else’s life. There’s one kid, now two of them,” said Alicia.
Alicia and Jon dealt with this devastating news while pregnant with Landon, and when he was born…
“We found two days after he was born that he also has LAD 1.”
Meaning all three of their children need transplants from donors, their best chance of survival.
“Why them, mostly like not us so much as them. They’re such perfect kids. They don’t deserve it,” Alicia said.
Ava, Olivia and Landon are among 14,000 people in the U.S. waiting for a stem cell donor.
In a given year, 10,000 people won’t find one, even though there are 30 million people across the world on the donor registry.
Erica Sevilla is with “Be the Match” and stressed it’s simple to best tested for the registry.
“What surprises many people is that only 30 percent of patients will not find a match within their household or within their family.”
Go online to request a kit, swab your cheeks and send it back.
In most cases, those who match would not have to undergo surgery.
“80 percent of the time it resembles a blood donation or a plasma donation where blood is extracted through your arm in a non-surgical procedure,” said Erica.
For this family, missing work and mounting medical bills adds to the stress.
“As soon as we could find a match, then we could get the process started for them one at a time,” said Alicia.
And they continue to pray for news: matches the could save three siblings’ lives.
“Even if it’s not helping our children, there’s tons of people out there that need a bone marrow transplant,” said father Jon Langenhop.
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