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3 siblings with rare, life-threatening blood disease in need of bone marrow transplantation



Three young siblings in Ohio are among thousands of people across the country in need of bone marrow transplants. Three-year-old Ava Langenhope, her 2-year-old sister Olivia and their 2-week-old brother, Landon, have all been diagnosed with a life-threatening blood disorder called type 1 leukocyte adhesion deficiency. , but this year her parents became more concerned. "She started getting infections every time she got abused," said her mother, Alicia Langenhope. Doctors at Cincinnati Children's Hospital diagnosed her with the rare disease and were told by the family that a stem cell donor would be needed as part of her treatment. Her sister Olivia was tested as a possible donor, but she was found to have the same disorder . "We were in a state of shock, kind of like feeling like we were living another life, having one child, now there are two of them," Langenhope said. "They are such sweet girls, just perfect in every way, except for this unfortunate flaw with their bodies," said the girl's father, John Langenhope. Langenhops dealt with this devastating news while Alicia was pregnant with Landon. both parents were carriers, they were told that there was a 25% chance that Landon would also have LAD1

, and two days after he was born, tests confirmed that he had done so. Erica Sevilla, from Be the Match, stressed that just be tested for a donor registry by going online to request a kit , to smear your cheeks and send it back. In most cases, those found to be coincidental should not undergo surgery. "Eighty percent of the time, it's like blood donation or plasma donation, in which blood is drawn through your arm in a non-surgical procedure, "said Seville. According to the match, there are 14,000 people in the U.S. who are waiting for a bone marrow transplant. 10,000 will find none in a given year, although there are none in the registry 30 million people worldwide. "What surprises many people is that only 30% of patients will find a match within their household or family," Seville said. The Langenhop family have accumulated about $ 25,000 in medical bills since the diagnosis. A GoFundMe page has been created to help them with their bills and living expenses. The family hopes "10 out of 10 games" will give their children the best chance of a healthy life. No perfect matches for the girls were found. Perfect matches for Landon may be found, but more testing is needed. Meanwhile, Langenshop is praying for each of their children to receive a transplant one by one. They also hope that their personal history sheds light on the importance of the donor registry. "Even if it doesn't help our children, there are tons of people out there who need a bone marrow transplant," John said.

Three young brothers and sisters in Ohio are among the thousands across the country in need of bone marrow transplants.

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

As a baby, Ava often had diseases, including ear infections, including colds, but this year her parents became more concerned.

"She started to get infected every time she got a scrap," says her mother, Alicia Langenhope.

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

Her sister Olivia was tested as a possible donor, but it was determined. that she has the same disorder.

"We were kind of shocked, kind of feeling like we were living the life of someone else, was 'There's one kid, now they're two,'" Langenhope said.

"They are such sweet girls, just perfect in every way. except for this unfortunate flaw with their bodies, "says the girl's father, John Langenhope. [19659005] Langenshops dealt with this devastating news while Alicia was pregnant with Landon. Because both parents were carriers, they were told that there is a 25% chance of Landon also having LAD1 and two days after he was born, tests confirm that he is villa

Erica Sevilla, from Be the Match, emphasized that it is just to be tested for a donor registry by going online to request a kit, smudge your cheeks and send it back.

"Eighty percent of the time, it's like a blood donation or a plasma donation where blood is drawn through your arm in a non-surgical procedure," Seville said.

According to Be the Match, there are 14,000 people in the United States waiting for a bone marrow transplant. In a given year 10,000 of them will find none, although there are 30 million people worldwide.

"What surprises many people is that only 30% of patients will find a match within their household, or

the Langenhope family have accumulated about $ 25,000 in medical bills after diagnoses. A GoFundMe page has been created to help them with their bills and living expenses.

The family hopes for "10 out of 10 matches" to give their children the best chance of a healthy life. No perfect matches for the girls were found. Perfect matches for Landon may have been found, but more tests are needed.

Meanwhile, Langenhops prays for each of his children to receive a transplant one by one. They also hope that their personal history sheds light on the importance of the donor registry.

"Even if it doesn't help our children, there are tons of people who need a bone marrow transplant," John says.


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