Parents issue urgent plea for stem cell donor to save baby boy with rare blood condition

Parents issue urgent plea for stem cell donor to save baby boy with rare blood condition Baby Ellis was diagnosed with Wiskott-Aldrich Syndrome after months of hospital appointments - Bookmark - CommentsGo to comments Become an Independent member to bookmark this article Already a member? Log in The parents of a baby boy suffering from a rare, life-threatening blood condition have issued an urgent plea for a stem cell donor to afford their son "a chance to grow up". Ellis Feldon, who lives in North Devon, has spent much of his young life unwell, with his parents Matt and Caitlin initially believing he was suffering from allergies. Now aged 10 and a half months, the infant requires a vital stem cell transplant, but no suitable matches currently exist on the international register. Shortly after birth, Ellis was admitted to hospital with jaundice, and by last Christmas he was struggling to keep down his normal milk formula. As further symptoms developed, including severe eczema and blood spots across his skin, doctors carried out blood tests. Following months of medical appointments, he was diagnosed with Wiskott-Aldrich Syndrome (WAS), an extremely rare genetic condition that almost exclusively affects boys. The disorder impairs the body's capacity to fight off infection, causing symptoms such as severe eczema, easy bruising, bloody diarrhoea, and prolonged bleeding from minor scrapes. It is caused by genetic flaws on the X chromosome and affects roughly three in every million boys worldwide. Mr Feldon explained: "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. He was back in hospital days after he was born, and things have only snowballed from there." He added: "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." The family were informed of only two potential matches worldwide, but one cannot donate for over a year and the other is just an 85% match. Doctors have urged them not to delay the procedure, yet proceeding with an imperfect match leaves Ellis at risk of rejection and further health complications. Having relocated from Guildford, Surrey, to Caitlin’s hometown of Chulmleigh to be near relatives, the family are now partnering with blood cancer charity DKMS to encourage people to join the register. Anyone aged 16 to 55 can sign up by completing a health questionnaire and submitting a simple cheek swab using a free kit ordered online. 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." Although the family are trying to celebrate his childhood developments, Mr Feldon acknowledged the underlying anxiety. "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 added: "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." Join our commenting forum Join thought-provoking conversations, follow other Independent readers and see their replies Comments