A FAMILY whose son was saved from a rare life-threatening blood disorder are urging people to support the NHS National Blood Cell Donor Service.
Fortunately, seven-year-old Jasper Hodgson-Smith’s cure came from his father Matt, who turned out to be a perfect stem cell match. This is rare as only 25 per cent of family members tend to be a match. The family from south Wales hopes that sharing their story will encourage more people to consider helping patients in need by donating blood or stem cells with the Welsh Blood Service.
After spending his early years in and out of hospital, Jasper was diagnosed with a rare blood disorder, Activated PI3K Delta Syndrome (APDS); he is the only known child with this condition in Wales, and one of an estimated 35 patients in the whole of the UK.
Discussing his diagnosis, Jasper’s mother, Sophie said, “From eight months old, Jasper exhibited numerous symptoms, including lethargy, persistent high temperatures, and a lack of appetite. Due to the rarity of his blood disorder, it took a long time to identify his condition, which was thought to be chest infections, meaning he was regularly prescribed antibiotics and admitted to hospital around six to eight times a year.”
For individuals with APDS and particularly young patients, a stem cell transplantation offers a chance to cure the genetic defect by replacing the abnormal immune cells with Matt’s healthy cells.
Jasper’s treatment included receiving multiple blood and platelet transfusions, immunoglobulin replacement therapy and chemotherapy to prepare his body for a stem cell transplant.
Matt said: “Some people think donating stem cells may be painful or invasive. For me, the process was simple. I would do it again in a heartbeat if it meant saving someone’s life.”
Matt donated his stem cells through a process known as peripheral blood stem cell transplantation. Around 90% of donations are now given through this method. Stem cells are collected from the bloodstream and filtered using a special machine.
Sophie added: “Despite everything he’s faced, Jasper has remained incredibly strong and full of life — always dancing (he even danced his way through the transplant), singing, and making people smile, even during the toughest days.
“Once Jasper is feeling fit and well, we are looking forward to spending more time as a family and have lots of beach walks and adventures planned with our dog, Pip.”
Unfortunately, when it comes to stem cell donations, three in ten patients across the world will not find the suitable match they desperately need and that statistic is even higher for donors from a black, Asian, minority or mixed ethnic background.
Welsh Blood Service Director, Alan Prosser said: “Sharing stories like Jasper’s highlights the true value of donation and the difference it makes. Jasper found a stem cell match within his family, but for most patients, their only hope is to receive a stem cell transplant is from an unknown donor.”
Alan continued, “We are busy recruiting more people to become blood donors and to join our stem cell Registry… there as never been a better time to sign up and join our incredible community of lifesavers here in Wales.”
To learn more about donating blood, platelets or stem cells, visit www.wbs.wales/NBDW25 or call 0800 252266.
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