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Doctors are searching for bone marrow donors in a bid to cure a schoolboy suffering from a life-threatening illness that affects just one in 500,000 people.
Ethan Wells, from Herne Bay, has had to stop attending classes at Briary Primary School after being diagnosed with the rare condition aplastic anemia in December.
The 10-year-old scarcely leaves his Greenhill home – only venturing out for walks and hospital visits – as his condition makes him susceptible to adverse reactions from colds.
Only three people around the world have been identified as bone marrow matches for the child, but medics have been unable to make contact with them over the past six weeks.
Mum Tracy Wells told KentOnline: “We were extremely lucky to get three matches, but none of them have come forward and we don’t understand why.
“The doctors want to give it another month for them to come forward, if they don’t we’ll be seeking alternative treatment.
“He can’t fight any infection. If his temperature goes above 38C, we have to take him straight to hospital.
“He needs regular blood transfusions just to keep him going.”
Ethan was first admitted to hospital after Ms Wells, 45, noticed he had grown “unusually pale” – to the point his lips were turning white – and developed unexplained bruising.
Concerned staff at the QEQM in Margate initially warned his family that his symptoms could be a sign of leukaemia, prompting his mother to think: “That was it, we were going to lose him.”
It took five days until they were informed he in fact had aplastic anemia, following blood tests at King’s College Hospital in London.
The severe blood disorder is caused by the bone marrow’s failure to produce blood cells, making sufferers bruise or bleed more easily and experience fatigue, while also raising the risk of infections.
“I just feel like he’s really missing out – he’s been stuck at home,” Ms Wells added.
“It's like being in isolation, and he's not having a normal life. He goes out for hospital trips and walks, but he can’t overexert himself because he doesn’t have enough oxygen in his blood.
“At first, he liked being at home because it meant he could watch what he wanted, but he has said to me a couple of times ‘I miss my friends’.
“He’s got a little sister in nursery, and when she gets home, we tend to try to keep them apart (in case he picks up a cold). He spends a lot of time in his room, and I think he’s getting a bit fed up.”
Bone marrow transplants are the preferred form of treatment for the condition in young people – but like more than 65% of people, Ethan was unable to match with a sibling.
Instead, he is forced to rely on those who have signed up to the global network of international donor registers the NHS has access to.
If the search for a donor fails, then Ethan will be given immunosuppressive therapy, which Ms Wells says is less likely to permanently cure her son.
“We were extremely lucky to get three matches in Germany and Austria, but none of them have come forward and we don’t understand why,” she added.
“King’s want to give it another month for them to come forward.
“We were extremely lucky to get three matches. A lot of people don’t even get one match.
"We were extremely lucky to get three matches in Germany and Austria, but none of them have come forward..."
“I wanted to raise awareness so people sign up to be bone marrow donors.
“A lot of people don’t understand how easy it is to register. It’s not a blood test; it’s a simple mouth swab.”
For more information on how to become a bone marrow donor, click here.
Ethan's family are also raising cash "to give him something to look forward to" once he is treated. To donate, click here.