Three young siblings wait for life-saving bone marrow transplant


Three young siblings wait for life-saving bone marrow transplant
Ava and Olivia Langenhop were recently diagnosed with a rare, potentially deadly blood disorder. Their parents hope to find a bone marrow donor who can save their life, along with their 2-week-old brother's. (Source: WEWS)

CANTON, Ohio (WEWS/CNN) - There are 14,000 people in the U.S. waiting for a bone marrow transplant, and among those people are three siblings in Ohio.

The children were just added to that list because of a rare blood disorder.

As the family waits for transplants, they hope their story will inspire others to add themselves to the donor registry.

The Langenhops recently welcomed a baby boy, Landon, to the family, and their two daughters, Ava,3, and Olivia, 2, are inseparable.

Alicia Langenhop and Jon Langenhop naturally are very proud of their kids.

“They’re such sweet girls just perfect in every way except for this one unfortunate flaw with their bodies,” Jon Langenhop said.

From the time Ava was a baby, she had a lot of illnesses like ear infections and colds, but this year, her diagnoses were much more serious.

"She started getting infections every time she would fall and get a scrape," Alicia Langenhop said.

Doctors at Cincinnati Children's Hospital diagnosed Ava with a potentially deadly blood disorder, called leukocyte adhesion deficiency type 1.

Alicia and Jon Langenhop learned they're both carriers.

Ava needs a bone marrow transplant. At first, they looked to her sister, Olivia, as a potential donor, but when she was tested, 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 - like there's one kid, now two of them," Alicia Langenhop said.

Alicia and Jon Langenhop dealt with the devastating news while pregnant with Landon, and when he was born, they had him tested too. They found out that he also has the disorder.

The Langenhops must face the reality that all three of their children need perfect-match transplants from donors for 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 Langenhop said.

In a given year, 10,000 people won't find their match, even though there are 30 million people across the world on the donor registry.

"What surprises many people is the only 30 percent of patients will not find a match within their household or within their family," said Erica Sevilla with Be The Match.

Sevilla said it’s simple to get tested for the registry: Just go to bethematch.com, request a kit, swab your cheeks and send it back.

In most cases, those who match don't undergo surgery.

"Eighty 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," Sevilla said.

For the Langenhops, 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," Alicia Langenhop said.

And they continue to pray for the news that there's a match to save the lives of their three children.

"Even if it's not helping our children, there's tons of people out there that need a bone marrow transplant," Jon Langenhop said.

Copyright 2019 WEWS via CNN. All rights reserved.