**Swansea Family Celebrate Lifesaving Success After Son’s Rare Illness and Father’s Remarkable Donation**
In Swansea, the Hodgson-Smith family has emerged from a harrowing journey marked by heartbreak, uncertainty, and ultimately, a remarkable triumph. Their son, Jasper, has battled a rare immune condition since infancy, enduring repeated infections and more than 50 bottles of antibiotics before a lifesaving intervention from his father.
Jasper, now seven, is believed to be the only child in Wales diagnosed with Activated PI3K Delta Syndrome (APDS), a rare genetic disorder discovered only 13 years ago. APDS leaves those affected with a severely compromised immune system, making routine infections potentially life-threatening. His parents, Sophie and Matt, noticed something was wrong when their baby developed a chest infection at just eight months old—a worrying prelude to years of recurrent illness.
“From eight months, Jasper was constantly ill,” recalled Sophie. “He’d spend time in hospital for chest infections—sometimes up to six times each year. Before he turned six, he’d already been prescribed enough antibiotics to fill 50 bottles, which was unimaginable for us as new parents.”
Despite the family’s anxiety, it was the persistence of consultants at Singleton Hospital that finally led to real answers. After Jasper failed to respond to his immunisations, further investigations and genetic testing confirmed the presence of APDS. As Sophie noted, “We always felt something wasn’t right, but so few people suffer from this condition that it took years to discover.”
The scarcity of APDS diagnoses in the UK—only around 35 patients—underscored just how rare and difficult the condition is to identify. The demand for a rigorous search for answers led the family into a world of genetic testing and highly specialised care, involving teams of professors, nurses, and experienced paediatricians.
Receiving a diagnosis, however, was only the start of the next challenge. To truly cure APDS, Jasper needed a stem cell transplant to replace his faulty immune system with healthy cells. Yet, finding a compatible donor is an obstacle for many families—only one in four UK patients locate a match within their relatives. The Hodgson-Smiths were among the fortunate few: Jasper’s father Matt proved to be a suitable donor.
“It was an incredible relief,” Sophie admitted. “We’d seen potential matches on the international registry who ultimately weren’t compatible, so discovering Matt could be a donor was overwhelming in the best possible way.”
Matt’s experience as a donor proved eye-opening, helping to dispel common myths about stem cell donation. Far from being a grueling or invasive process, it consisted of daily injections followed by a relatively simple blood procedure. “I felt privileged to help,” said Matt. “If more people knew how straightforward it was, I think we’d see many more willing donors.”
The road to recovery, however, remains long. Jasper underwent preparatory chemotherapy, multiple blood and platelet transfusions, and still faces months of hospital visits and restricted exposure to the outside world. The transplant itself required the family to relocate to Newcastle’s Great North Children’s Hospital, far from friends and family in Wales, for several months of treatment and recovery.
Despite these difficulties, community support was vital. The family expressed deep gratitude for the role played by local charities and friends, as well as the flexibility of NHS professionals coordinating care across the UK. Sophie said, “We couldn’t have managed without the love from our friends, family, and support from charities, many of whom were set up in memory of children lost to illness—something that hit close to home for us.”
Throughout his ordeal, Jasper’s resilience has shone through, though the experience has left him with difficult questions and sacrifices. From missing school to being isolated for health reasons, his childhood has been anything but typical. Nevertheless, his wise outlook and determination have helped the family endure.
The Hodgson-Smiths are now passionate about raising awareness of the importance of blood and stem cell donation. “Jasper needed blood and platelets from strangers as well as his dad’s stem cells,” Sophie explained. “We’re here, looking forward to school, beach walks, and adventures with our dog Pip, only because of the kindness of donors.”
Alan Prosser, Director of the Welsh Blood Service, echoed this message, stating, “Stories like Jasper’s demonstrate just how precious blood and stem cell donations are. We urgently need more people to join our registry, so more families can experience hope and recovery.”
As Jasper continues his recovery, the family look forward to the future—and wish to inspire others to consider becoming potential lifesavers themselves. For many, the chance to make a difference truly can be as simple as a donation.