North Carolina 6yearold searching for bone marrow donor
Dec 11, 2024
APEX, N.C. (WNCN) — About two months ago, an Apex family felt their world completely change.
“It’s just hard because she was supposed to be out there playing like other kids. She was supposed to be at the playground, she was supposed to be at school. Then she’s at the hospital, waiting for a second chance,” said Taise Da Silva.
The Apex mother said she first brought her six-year-old daughter, Louise, to a pediatrician in October. She noticed unexplained red dots and bruises on the girl’s body.
“It was more like places that she wouldn’t bump, like on her back or the line of her socks,” explained Da Silva. “It was just weird—when one bruise would go away, a new one would come.”
Mariah Ellis/CBS 17
Mariah Ellis/CBS 17
Mariah Ellis/CBS 17
On October 17, Da Silva said doctors with Duke diagnosed Louise with a rare disease called Severe Aplastic Anemia. She said the disease has not only caused Louise to feel more tired and out of breath, but her body is failing to produce new blood cells and platelets.
Because doctors also determined Louise was born with short telomeres, Da Silva said a bone marrow transplant is now her daughter’s only cure.
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“Once in a while, her nose starts to bleed and we have like five minutes to stop the bleeding or we have to rush her to the ER,” said Da Silva. “It is hard, she has not been able to go to school since October, we are isolated, she hasn’t seen her friends since then… It’s hard to know if we’ll be able to find this donor — will that be soon enough?”
NMDP, a global nonprofit in cell therapy, says about 18,000 patients are diagnosed with a life-threatening blood cancer or disease where a blood stem cell transplant may be their only hope for a cure. The organization says 70% of patients don’t have a fully matched donor in their family.
“You always see someone else in the news that has a rare disease or someone that needs a transplant, and you never think that disease or that person needing the transplant is your child,” said Silva.
Dr. Paul Armistead with UNC Health said, “(A) bone marrow transplant is a little different from other organ transplants. Nowadays, we can almost always find a bone marrow donor, but the question is how good of a match is that donor to the patient?”
Armistead said there’s about a one in four chance that a patient’s sibling will be a ‘perfect match,’ and a parent of the patient is almost guaranteed to be a ‘half match.’ Armistead also noted that the odds of finding that matched donor can vary by race and special circumstances might arise for each patient.
Da Silva said she is a 50% match for her daughter, but it’s not ideal and they’re still looking to see if there might be additional complications.
The family told CBS 17 that at least five matches in the registered donor database have been located in Brazil, but outdated information has made it extremely difficult to find four of those individuals. She said doctors are still determining if at least one person may be a true match. Da Silva said Louise, an only child, continues get weekly blood tests, platelets, and additional transfusions at least once a month while they continue to wait.
Throughout the process, Da Silva said the family has also felt an overwhelming amount of support from friends, family, and even a few strangers.
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“Those are our angels... some friends that we know that are supporting us and helping us spread the word,” said Da Silva. “Some of them we don’t know and some of them just message me and say, ‘Hey, how can I help?’”
Courtesy of the Da Silva family
Just over the weekend, the family said a recruitment event, organized by NMDP, helped gain a couple dozen new people who registered to become a donor.
Even if that one person who signs up isn’t the right match for Louise, Da Silva said that person could potentially be the right match for someone else also searching.
The Apex mother added, “We hope that more people will register and update their information so more people around the world can have a second chance.”
According to NMDP, donors must be between the ages of 18-40 and a resident of the US. Currently, the organization said more than nine million potential donors are on the NMDP registry.