A fundraiser has been set up to support the family of a baby girl who will soon receive a stem cell transplant following a ‘one-in-a-billion’ diagnosis.
Fourteen-month-old Robyn Neville Quinn was diagnosed with Wiskott-Aldrich Syndrome in March this year after Robyn developed a persistent rash.
Wiskott-Aldrich Syndrome is an immune disorder that almost exclusively affects males, with fewer than 20 female cases reported worldwide.
Robyn’s parents, Meagan Quinn and Adam Neville – a young couple from Co. Laois, who now live in Craigavon – were told the only cure for Robyn’s condition was a bone-marrow transplant, which she is due to receive later this year at Great Ormond Street Hospital in London.
Meagan describes Robyn as a “happy and bubbly little baby” whom “absolutely everyone falls in love with”.
While Robyn is not in pain, she can become “tired and cranky” when her platelets are low.
The couple are seeking to raise awareness around Robyn’s story and raise money to help her receive the surgery.
Robyn was born in June 2023 but her parents noticed a rash that wouldn’t go away.
“We got her blood tested and her platelets were really low, so that kind of kick-started everything in October last year,” Meagan recalled.
“She’s had many platelet transfusions and she’s been admitted to hospital quite a lot for genetic testing. They had to do that in London and that took about five or six months to come back.”
In March, the results came back, and Robyn received her diagnosis.
Robyn’s condition leads to immune deficiency, severely compromising her immune system.
“We just have to keep her sheltered,” Meagan said. “The risk of infection is really high so we can’t bring her to public places or where there’s crowds.
“Even when family come up we have to make them wash their hands before they touch her. It’s little things like that you just wouldn’t really have to think about with a normal one-year-old.
“We’re just heartbroken and in constant worry. Stress is the biggest thing for us at the minute. I can’t remember what not feeling stressed was like. That’s pretty much what our lives have been like for the past year.”
Robyn. Photo Credit: Photography by Anna
The fundraiser, which was set up by Meagan’s family, has already reached nearly £15,000 in donations and will help Meagan and Adam during a time that is not only emotionally distressing, but financially challenging too.
Meagan explained: “I haven’t been able to go back to work and my partner has had to take time off to be with us in the hospital. The loss of those two incomes was really stressful so that’s why my family decided to help us out a bit. The response so far has been amazing!”
To the family’s great relief, Robyn recently found her perfect stem cell match, meaning she is due to receive the surgery later this year. However, Meagan admits that she hadn’t expected it to reach this point.
“I didn’t think she’d actually need a big operation, but then when we got the diagnosis they said she would eventually die because she doesn’t make enough platelets. She’d be at really high risk for having an internal brain haemorrhage.
“The doctors told us it was the only thing to cure her so we decided to go for it. There’s no other option because once she gets her transplant, she’ll be cured. She’ll have a brand-new immune system and hopefully she will have enough platelets that she won’t need transfusions.
“She will hopefully be able to live a normal life and go to school and have all the normal things that we want her to have.”
In October, the family will travel to London to meet the bone marrow transplant team to find out more information about the road ahead.
“It’s amazing. I just cried the whole day after we found out. It’s a perfect match, which makes it even better,” Meagan said.
Faced with a one-in-a-billion diagnosis, Meagan and Adam felt it was important to raise awareness about the condition.
“Just because it’s such a rare disease, but it’s even rarer in girls,” she said. “We were told it’s a one-in-a-billion chance for a girl to have this, so we thought it was important to raise awareness.
“Especially if there’s other parents going through this and they feel they’re not being listened to. If you feel something’s not right, trust your instinct and get a blood test.”
Meagan also encouraged the public to sign up to become stem cell donors.
“It’s so important that people sign up to that, because just a simple donation could literally save someone’s life. Signing up to the registry is really simple. They send out a little swab and you just swab the inside of your cheek and send it away.
“They just put you on the database and you might never be called, but in the case that someone did need your stem cells at least you can save a life.”
You can sign up to the stem cell register by visiting the link here. You can also visit the family’s GoFundMe page to make a donation.
