HUNDREDS of people signed themselves up to the bone marrow transplant register yesterday as a South Wales Argus-organised swab event in support of a seriously-ill six-year-old from Newport who is desperately searching for a compatible donor.
Marley Nicholls’ family are running a heart-breaking race a against time to find a match for their son.
Despite signing up more than 40,000 people to the world-wide register under the Marrow for Marley banner, they are still waiting for a match for Marley.
Of those 40,000 registered, only seven matches have been found for others in need of a transplant.
This is the reality of life on the waiting list.
Marley's mum, Shaney Truman, spoke to the Argus about the importance of signing up to the register:
Brave Marley Nicholls, from St Julian’s in Newport, was diagnosed with a rare blood disorder called aplastic anaemia in July last year.
Doctors have given him around two years to live if no match is found, and the worldwide Marrow for Marley campaign has been scouring the globe for new donors to add to the transplant list in the hope of finding a match.
The situation is getting so desperate, explained Marley’s dad Joe Nicholls, that doctors are considering trying a non-perfect match if he doesn’t respond to his latest round of treatment within three months.
As part of this risky strategy, Marley’s mum and four-year-old brother George, would be considered as matches, along with his dad.
“It’s the kind of thing that could do more harm than good,” said Mr Nicholls, speaking to the Argus at the Marrow for Marley swab event held in the Newport Centre today (Saturday, April 20).
“They look for perfect 10 out of 10 matches, especially for children. But if he doesn’t respond to the latest round of treatment then they will look again at existing, near perfect matches.
“Otherwise, they say he’s got two to three years to live.”
But despite the bleak outlook, Mr Nicholls said that he was always amazed at Marley’s resilience.
“It was really hard at first to take him out of school. He is such a social butterfly, more so than any six year old I’ve ever met.
“He really misses his teachers and his friends, so that can be hard. But we’ve got a tutor who comes in for a few hours everyday, which helps.
“But he’s so brave. I’m not sure I could be as brave as he is, and I’m an adult. He takes everything in his stride - the hospital appointments, the blood transfusions, the low energy. Absolutely nothing fazes him.”
Ms Truman, who has been a driving force behind the Marrow for Marley campaign, said that her son was a “little soldier”.
“I don’t know how he does it,” she told the Argus while collecting registrations at the Kingsway Shopping centre in Newport.
“He is on his knees at times. The treatment he’s on now is part of a medical trial, so the intensity is doubled. He’s on so much medication at the moment and there are a lot of side effects.
“But he just has a little cry and looks at me and says: ‘No mummy, it’s OK. I can do this.’
“He’s my little soldier, he really is.”
Signing up to the register couldn’t be easier. The whole process can be done in less than five minutes, and if you can’t make on of the regular Marrow for Marley events, you can sign up online at www.dkms.org.uk or www.anthonynolan.org and complete the process in minutes at home.
A swab will be posted to your home address along with a freepost envelope to send it back.
Katie Waite, 31, of Risca signed the register and got swabbed at the Newport centre today in the company of her two young sons.
She told the Argus she was angry at herself for not doing it sooner.
“It’s so easy and quick to do. Just a form and a quick swab, and that’s it. I don’t know why more people haven’t done it.
“Both of my boys, Charlie and Harry, wanted to do it too – but they’re too young.”
Alice Mundy, 33, came from Magor to Newport to sign the register today. She said it was the first time she’s been able to come to an event.
“I donate blood regularly, so I’m here to help out. If you can offer your help and give yourself a chance to save any life then you should.
“I saw the article in the Argus online this morning. Everyone should register – if it doesn’t help Marley it might help someone else.”
Joe Mcdonagh, 37, of Rogerstone, uses the sports facilities Newport Centre every Saturday, and said there was no excuse to not sign up.
“I’ve been meaning to do it for a long time, after following Marley’s story.
“I’m here because if there’s anything I can do to help, then I want to do it. It could even help somebody other than Marley.”
The Marrow for Marley campaign has signed up more than 40,000 new people to the bone marrow register since last August. Of those, seven matches have been found.
Those are the odds facing Marley’s family.
Around 90 per cent of matches will be able to donate their bone marrow through giving blood.
The remaining 10 per cent will have it extracted from their hip in a procedure Marley himself has undergone a handful of times.
“If Marley can do it and be running around ten minutes later, then it can’t be that painful,” said his dad at today’s event.
Marley’s family won’t stop fighting for his life until a match is found. Sign up today online using the links below.
https://www.dkms.org.uk/en/register-now
https://www.anthonynolan.org/donor-application/begin
You can find more information about he Marrow for Marley campaign on their dedicated Facebook page.
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