A family is appealing for a stem cell donor to help save their baby son, who has been diagnosed with a rare genetic blood disorder. Ellis Feldon, aged 10 and a half months, has Wiskott-Aldrich Syndrome (WAS), a condition that almost exclusively affects boys and impairs the body's ability to fight infection.
Symptoms include easy bruising, eczema, bloody diarrhoea, and prolonged bleeding after minor bumps or scrapes. His parents, Matt and Caitlin, say Ellis now needs a potentially life-saving stem cell transplant, but no good options exist on the current register.
A Difficult Start for Ellis
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. He was back in hospital days after he was born, and things have only snowballed from there.”
Ellis, from North Devon, has been ill for most of his life. His parents initially suspected allergies soon after his birth. After struggling to keep down his usual formula and developing eczema and blood spots on his skin, he was offered blood tests.
Following months of hospital appointments, Ellis was diagnosed with WAS, which affects around three in every million boys worldwide.
Limited Transplant Options
Mr Feldon said the family has been told of just two potential options for Ellis. One donor is not eligible to donate for more than a year, and the other is only an 85% match. Medics have advised against delaying the transplant, but going ahead with a less-than-perfect match carries risks of rejection and other complications.
“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.
Appeal to Join the Register
The family, who moved from Guildford, Surrey, back to Caitlin's hometown of Chulmleigh to be closer to relatives, are working with blood cancer charity DKMS to encourage people to sign up as stem cell donors. Anyone aged 16 to 55 can register by answering 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's 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.”
