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3 siblings with rare, life-threatening blood disorder requiring a bone marrow transplant



Three young siblings in Ohio are among thousands of people across the country who need bone marrow transplants. Three-year-old Ava Langenhop, her two-year-old sister Olivia, and her two-week-old brother, Landon, were all diagnosed with a life-threatening blood disorder called Leukocyte Adhesion Deficiency Type 1. As a baby, Ava often had illnesses, including ear infections and colds, but this year, her parents became more worried. "She started to get worried Every time she scratched, she got infections," her mother Alicia Langenhop said. Doctors at the Cincinnati Children's Hospital diagnosed them with the rare disease, and the family was told that stem cell donation would be required as part of their treatment. Her sister Olivia was tested as a possible donor, but was found to have the same disorder: "We were a bit shocked and felt like we were leading someone else's life as if there were a child, now two," said Langenhop. "They are so cute girls, just perfect in everyone Apart from this one unfortunate mistake in their bodies," said the girl's father, Jon Langenhop. The Langenhops were busy with this devastating news while Alicia was pregnant with Landon. Since both parents were carriers, they were told that Landon would also have LAD1

with 25% probability, and two days after his birth, tests confirmed that this was the case. Be the Match Erica Sevilla emphasized that it is easy to be tested on LAD1 The donor registry can be accessed online to request a kit, wipe the cheeks and resubmit it. In most cases, matches do not have to undergo surgery. "In 80 percent of cases, it's similar to donating blood or a plasma donor that uses blood to remove blood from a non-surgical procedure," Sevilla said. According to Be the Match, 14,000 people in the US are waiting for a bone marrow transplant. In a given year, 10,000 of them will not find one, even though 30 million people are registered around the world. "What surprised many people is that only 30% of patients find a match in their household or in their family," said Sevilla. The Langenhop family has accumulated about $ 25,000 in medical bills since the diagnosis. A GoFundMe page has been set up to help with bills and cost of living. The family hopes for "10 out of 10 games" to give their children the best chance of a healthy life. Perfect matches for the girls were not found. It may have found perfect matches with Landon, but more testing is needed. In the meantime, the Langenhops are praying that each of their children will receive a transplant in turn. They also hope that their personal history sheds light on the importance of the donor registry: "Even if it does not help our children, there are tons of people who need a bone marrow transplant," said Jon.

Three young siblings in Ohio are among thousands of people across the country who need a bone marrow transplant.

Three-year-old Ava Langenhop, her 2-year-old Olivia and her two-week-old brother Landon were diagnosed with a life-threatening blood disorder called leukocyte adhesion deficiency type 1.

As a baby, Ava often had illnesses, including ear infections and colds, but this year her parents became more worried.

"She got infections every time she scratched," her mother Alicia Langenhop said.

Doctors at Cincinnati Children's Hospital diagnosed her with the rare disease and the family was told that a stem cell donor was needed as part of her treatment.

Her sister Olivia was tested as a potential donor but was found to have the same disorder.

"We were friendly in shock, a feeling that we were living someone else's life, there is no child left, now two of them," Langenhop said.

"They are so cute girls, just perfect in every way, except for this one unfortunate mistake with their bodies," said the girl's father, Jon Langenhop. 19659005] The Langenhops dealt with this devastating news while Alicia was pregnant with Landon. Since both parents were carriers, they were told that Landon would also have LAD1 with 25% probability, and two days after his birth, tests confirmed that this was the case.

Erica Sevilla of Be the Match emphasized that it was easy to be tested for the donor registry by going online to request a kit, wipe your cheeks and send it back. In most cases, the matches did not have to undergo surgery.

"In 80 percent of cases, it's similar to donating blood or donating plasma through your arm in a non-surgical procedure," Sevilla said.

According to Be the Match, 14,000 people in the US are waiting for a bone marrow transplant. In a given year, 10,000 of them will not find one, even though 30 million people are registered around the world.

"What surprised many people is that only 30% of patients find a match in their household or in their family," said Sevilla.

The Langenhop family has accumulated about $ 25,000 in medical bills since the diagnosis. A GoFundMe page has been set up to help with bills and living expenses.

The family hopes for "10 out of 10 games" to give their children the best chance of a healthy life. Perfect matches for the girls were not found. It may have found perfect matches with Landon, but more testing is needed.

In the meantime, the Langenhops are praying that each of their children will receive a transplant in turn. They also hope their personal history will shed light on the importance of the donor registry.

"While it does not help our children, there are tons of people who need a bone marrow transplant," Jon said.


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