Search for life-saving stem cell match after baby girl receives one in a billion diagnosis
The parents of a 14-month-old baby girl with a life-threatening immune disorder so rare that it makes her one in one billion are on a mission to find her a stem cell match.
They say a bone marrow transplant would cure Robyn Neville Quinn from Wiskott-Aldrich Syndrome, and end her cycle of medication and hospitalisation.
Robyn was enjoying some carrot snacks and blueberry wafers during her UTV interview at home in Craigavon. She is usually found playing at home, because her immune condition means it wouldn't be safe to go to places like swimming pools or shared play areas.
Laois born parents Adam and Meagan say she loves watching the Miss Rachel TV show, playing in her ball-pit, and cuddling her Elmo teddy.
"She's the most playful, energetic and troublemaking baby. She's so precious and she's very kind hearted," said dad Adam.
Since Robyn's birth in June 2023 though, there have been many dark and scary days.
Robyn was covered in rashes, bruises, and doctors realised her platelet count was dangerously low, resulting in the need for multiple transfusions as her own immune system is totally compromised.
Boys often are born with Wiskott-Aldrich Syndrome as it’s carried by one X chromosome, however girls almost never have it, meaning that her parents found it difficult to access information online.
It was initially thought that her symptoms were because of a milk allergy, but extensive blood tests revealed her condition.
"When she was about four, five months old, we found out and she had something called ITP, which is basically low platelets," said Meagan.
"So she needed weekly transfusions of platelets because they were so low, they were single figures... five, six, that's really dangerous.
"Then they had done genetic testing in the Royal Belfast Hospital, and those took about five, six months to come back. That's when we got her diagnosis," she said, adding that this means unfortunately, that Robyn is a one in a billion baby.
"She's going to need a bone marrow transplant," said dad Adam.
"This will basically kill off her immune system and replace it with someone else's immune system."
Partner Meagan continued that she'll "still have it in her genes, but she'll have no symptoms."
"So, she'll live a normal life and she won't need the transfusions or go to hospital anymore.
"We'll be really grateful to whoever does donate their their stem cells to Robin because they will save her life."
Chemotherapy to blast Robyn's immune system before a transplant is scheduled in London in October, with doctors hopeful a match will be found by then.
A fundraising page has also been set up to help Adam and Meagan cover the costs they'll incur when they stay in London during Robyn's chemotherapy and subsequent bone marrow transplant.
How can you become a stem cell donor?
Donation starts with a cheek swab, which is posted off, and potential donors stay on the register for year to be contacted if a match ever comes up.
So what happens if you do get the call?
"90% of people donate in a process called peripheral blood stem cell (PBSC) collection, which uses a special machine to filter out stem cells from your bloodstream," according to stem cell charity Anthony Nolan.
"You’ll receive a course of injections for a few days first, then go into hospital for the collection, which usually takes around 4-5 hours.
"10% of people donate through their bone marrow. The cells are collected from your hip bone. You’re placed under a general anesthetic throughout. This means you will be unconscious and won’t feel any pain. You’ll stay in hospital for two nights," explains the website.
DKMS is another stem cell charity focusing on donations, transplants and fundraising.
It's an abbreviation for Deutsche Knochenmarkspenderdatei, which translates to "German Bone Marrow Donor Center".
To sign up to become a stem cell donor, you can register via the DKMS website here or via the Anthony Nolan register here.
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