Family pleads for stem cell donor to give baby boy the chance to grow up

Family pleads for stem cell donor to give baby boy the chance to grow up Ellis Feldon needs a potentially life-saving, stem cell transplant, having been diagnosed with Wiskott-Aldrich Syndrome (WAS), a genetic disorder that almost exclusively affects boys The parents of a baby boy diagnosed with a rare and life-threatening blood disorder have issued a plea for a stem cell donor to give their son "a chance to grow up". Ellis Feldon, from North Devon, has been ill most of his life, with parents Matt and Caitlin initially suspecting allergies. Now 10 and a half months old, he requires a potentially life-saving, stem cell transplant, but there are no good options on the existing register. Ellis was readmitted to hospital with jaundice soon after he was born and, by last Christmas, was struggling to keep his usual formula down. When further symptoms appeared, including severe eczema and blood spots on his skin, he was offered blood tests. After months of hospital appointments, Ellis was eventually diagnosed with Wiskott-Aldrich Syndrome (WAS), a genetic disorder that almost exclusively affects boys. The condition impacts the body's ability to fight infection, with symptoms including easy bruising, eczema, bloody diarrhoea, and prolonged bleeding following small bumps or scrapes. It is caused by errors written into a section of DNA on the X chromosome and impacts around three in every million boys worldwide. Mr Feldon said: "In normal circumstances, you'd be able to really enjoy those first few months as first-time parents with your little baby, but Ellis has been ill since he was so small. "It's frustrating to think that there could be someone walking around who is a perfect match for Ellis, but because it's an opt-in system, they can't be checked. He was back in hospital days after he was born, and things have only snowballed from there. "Initially, we were told that the team was confident they would find a match for Ellis. We thought there would be plenty of options, given how many people are registered around the world. But the news isn't as good as we had hoped." Mr Feldon said the family have been told of just two potential options for Ellis, but one is not eligible to donate for more than a year and the other is only an 85% match. Medics have advised them not to delay the transplant, but going ahead with a less-than-perfect match puts him at risk of rejection and other complications. The family, who relocated from Guildford, Surrey, back to Caitlin's hometown of Chulmleigh to be closer to relatives, are now working with blood cancer charity DKMS to encourage people to sign up as stem cell donors. Anyone aged 16 to 55 can sign up by answering some health questions and completing a cheek swab using a free kit ordered on the DKMS website. Mr Feldon said: "It's frustrating to think that there could be someone walking around who is a perfect match for Ellis, but because it's an opt-in system, they can't be checked. "We want to do everything we can to give him the best possible chance, but we also want to help make sure other families don't find themselves in this position. "People don't always realise how straightforward it is to sign up, or how easy the donation process is. You could be the person who gives a child like Ellis the chance to grow up." Mr Feldon said the family wants to enjoy Ellis' milestones, but there is a "sadness in the background". "He's doing so many lovely things. He loves watching Ms Rachel, he has six teeth, he's crawling at speed and he's taken his first few wobbly steps. "We want to enjoy all of that, but there is always that sadness in the background. You want to be able to enjoy those milestones without worrying about what might happen next." A DKMS spokesperson said: "For Ellis and so many other patients, the right person signing up to the stem cell donor register could make all the difference. "It takes just a few minutes to register, but if you are matched with someone in need, your donation could give them a future they might otherwise not have. "We urgently need more people to come forward and join the register, helping to give Ellis and other patients diagnosed with blood cancers and disorders the best possible chance of finding a suitable donor."