Latest news with #ActivatedPI3KDeltaSyndrome
North Wales Chronicle
14 hours ago
- Health
- North Wales Chronicle
Welsh father calls for blood donors after saving son's life
Seven-year-old Jasper Hodgson-Smith, from Swansea, was diagnosed with a rare and life-threatening blood disorder called Activated PI3K Delta Syndrome (APDS). His father, Matt, was found to be a perfect stem cell match, giving Jasper a second chance at life. Matt donating stem cells (Image: Welsh Blood Service) The family is now sharing their story during National Blood Donor Week, which runs from June 9 to 15, to encourage more people across Wales to donate blood and stem cells through the Welsh Blood Service. Sophie Hodgson-Smith, Jasper's mother, 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." Matt with his son (Image: Welsh Blood Service) APDS is extremely rare, with Jasper believed to be the only child in Wales with the condition and one of just 35 patients in the UK. APDS affects the immune system, and for young patients, a stem cell transplant is often the only curative treatment. Jasper's care involved multiple blood and platelet transfusions, immunoglobulin replacement therapy, chemotherapy, and ultimately a stem cell transplant. Only one in four patients in the UK will find a family member who is a suitable match. Mr Hodgson-Smith said: "Blood disorders are as life-threatening as cancer and require just as much resilience. "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." He donated his stem cells through peripheral blood stem cell transplantation, a procedure that collects stem cells from the bloodstream using a special machine. Jasper's mother said he remained positive throughout his treatment. She said: "Despite everything he's faced, Jasper has remained incredibly strong and full of life—always dancing, 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." The Hodgson-Smith family hopes their story will inspire more people across North Wales and beyond to consider donating blood or stem cells. The need for donors is ongoing, with more than 15,000 blood donations required annually in North Wales alone to support patients at hospitals including Ysbyty Glan Clwyd, Ysbyty Gwynedd and Ysbyty Wrecsam Maelor. Frank Murphy, who lives in Wirral but worked at HMP Berwyn near Wrexham, was recently recognised by the Welsh Blood Service for helping to potentially save more than 1,200 lives. Not only has he donated blood more than 40 times, but he also encouraged colleagues at HMP Berwyn to donate on more than 400 occasions. Mr Murphy said: "Giving and supporting others to give blood and to save lives has, in my eyes, always been a must and a duty, and encouraging others to donate is a great feeling." Appointments to donate are available across the region.
Rhyl Journal
16 hours ago
- Health
- Rhyl Journal
Welsh father calls for blood donors after saving son's life
Seven-year-old Jasper Hodgson-Smith, from Swansea, was diagnosed with a rare and life-threatening blood disorder called Activated PI3K Delta Syndrome (APDS). His father, Matt, was found to be a perfect stem cell match, giving Jasper a second chance at life. Matt donating stem cells (Image: Welsh Blood Service) The family is now sharing their story during National Blood Donor Week, which runs from June 9 to 15, to encourage more people across Wales to donate blood and stem cells through the Welsh Blood Service. Sophie Hodgson-Smith, Jasper's mother, 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." Matt with his son (Image: Welsh Blood Service) APDS is extremely rare, with Jasper believed to be the only child in Wales with the condition and one of just 35 patients in the UK. APDS affects the immune system, and for young patients, a stem cell transplant is often the only curative treatment. Jasper's care involved multiple blood and platelet transfusions, immunoglobulin replacement therapy, chemotherapy, and ultimately a stem cell transplant. Only one in four patients in the UK will find a family member who is a suitable match. Mr Hodgson-Smith said: "Blood disorders are as life-threatening as cancer and require just as much resilience. "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." He donated his stem cells through peripheral blood stem cell transplantation, a procedure that collects stem cells from the bloodstream using a special machine. Jasper's mother said he remained positive throughout his treatment. She said: "Despite everything he's faced, Jasper has remained incredibly strong and full of life—always dancing, 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." The Hodgson-Smith family hopes their story will inspire more people across North Wales and beyond to consider donating blood or stem cells. The need for donors is ongoing, with more than 15,000 blood donations required annually in North Wales alone to support patients at hospitals including Ysbyty Glan Clwyd, Ysbyty Gwynedd and Ysbyty Wrecsam Maelor. Frank Murphy, who lives in Wirral but worked at HMP Berwyn near Wrexham, was recently recognised by the Welsh Blood Service for helping to potentially save more than 1,200 lives. Not only has he donated blood more than 40 times, but he also encouraged colleagues at HMP Berwyn to donate on more than 400 occasions. Mr Murphy said: "Giving and supporting others to give blood and to save lives has, in my eyes, always been a must and a duty, and encouraging others to donate is a great feeling." Appointments to donate are available across the region.
Leader Live
2 days ago
- Health
- Leader Live
Welsh father calls for blood donors after saving son's life
Seven-year-old Jasper Hodgson-Smith, from Swansea, was diagnosed with a rare and life-threatening blood disorder called Activated PI3K Delta Syndrome (APDS). His father, Matt, was found to be a perfect stem cell match, giving Jasper a second chance at life. Matt donating stem cells (Image: Welsh Blood Service) The family is now sharing their story during National Blood Donor Week, which runs from June 9 to 15, to encourage more people across Wales to donate blood and stem cells through the Welsh Blood Service. Sophie Hodgson-Smith, Jasper's mother, 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." Matt with his son (Image: Welsh Blood Service) APDS is extremely rare, with Jasper believed to be the only child in Wales with the condition and one of just 35 patients in the UK. APDS affects the immune system, and for young patients, a stem cell transplant is often the only curative treatment. Jasper's care involved multiple blood and platelet transfusions, immunoglobulin replacement therapy, chemotherapy, and ultimately a stem cell transplant. Only one in four patients in the UK will find a family member who is a suitable match. READ MORE: Flintshire and Wrexham's best pubs and bars to take dad to on Father's Day Mr Hodgson-Smith said: "Blood disorders are as life-threatening as cancer and require just as much resilience. "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." He donated his stem cells through peripheral blood stem cell transplantation, a procedure that collects stem cells from the bloodstream using a special machine. Jasper's mother said he remained positive throughout his treatment. She said: "Despite everything he's faced, Jasper has remained incredibly strong and full of life—always dancing, 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." The Hodgson-Smith family hopes their story will inspire more people across North Wales and beyond to consider donating blood or stem cells. The need for donors is ongoing, with more than 15,000 blood donations required annually in North Wales alone to support patients at hospitals including Ysbyty Glan Clwyd, Ysbyty Gwynedd and Ysbyty Wrecsam Maelor. Frank Murphy, who lives in Wirral but worked at HMP Berwyn near Wrexham, was recently recognised by the Welsh Blood Service for helping to potentially save more than 1,200 lives. Not only has he donated blood more than 40 times, but he also encouraged colleagues at HMP Berwyn to donate on more than 400 occasions. Mr Murphy said: "Giving and supporting others to give blood and to save lives has, in my eyes, always been a must and a duty, and encouraging others to donate is a great feeling." Appointments to donate are available in Mold on June 9, Bangor on June 10, and Llandudno on June 13, with further dates available across the region. To find out more about donating blood, platelets, or stem cells, visit or call 0800 252 266.
Yahoo
08-02-2025
- Health
- Yahoo
'Give my son the same support as cancer patients'
The mother of a seven-year-old with a life-threatening blood disorder says despite treatments being the same as cancer, they don't receive the same charity support. After spending the first five years of his life in and out of hospital, Jasper Hodgson-Smith was diagnosed with a rare primary immunodeficiency Activated PI3K Delta Syndrome (APDS) in August 2023. Jasper is the only known child in Wales to have APDS. Sophie Hodgson-Smith, 32, said some charities have refused the family help despite being uprooted to Newcastle from their home in Swansea for six months while Jasper undergoes a bone marrow transplant. Now, she is calling for blood disorders to be better supported and wants to de-bunk the myths around stem cell donation. Mum issues stem cell plea to save baby's life Donor from 'down the road' saved my life after global search 'Why I gave my kidney to a stranger' The family have had to relocate to Royal Victoria Infirmary for specialist care while Jasper undergoes a bone marrow transplant donated from his father, Matt Hodgson-Smith. Meanwhile, they still have to pay their mortgage for their home in Mumbles, Swansea, which Sophie's mum has moved into. Sophie said the situation had been very stressful, as she was let go from her job while her husband was granted sabbatical leave to support Jasper through his journey. She said the lack of awareness around blood disorders had left them isolated to certain financial support received from charities for those with more well known illnesses, such as cancer. "Blood cancer and blood disorders often require the same treatment journey, including finding a donor, enduring transfusions, and undergoing a transplant," said Sophie. Sophie said while cancer is no doubt absolutely awful to have to go through, "no child should be treated as less worthy because of the label attached to their illness". Jasper has received several transfusions from stem cell donors over the years, as well as rounds of chemotherapy to prepare his body for the transplant. Yet Sophie said the most help the family received was from The Masonic Hall charity, who assisted them with accommodation, while the charity Morgan's Army gifted a food voucher as a one-off, but said they usually help cancer patients. This extends into the hospital ward too, Sophie said, as children being treated with blood disorders are not enrolled on The Beads of Courage program, which helps children document their journey through treatment. "Blood disorders are just as life-threatening and require just as much resilience, yet these children and their families are often being left behind," she said. Co-founder of Beads of Courage, John Drummond, said it's the charity's "ultimate goal" that all children in the UK who are chronically ill or have life limiting conditions should have free access to the programme. He said he would expect a child being treated on an oncology ward to be enrolled into the programme, but sometimes new staff are "not trained on correct policies and procedures", partly down to lack of funding. "Currently we only have a sponsor for the oncology part of our programme and in order for us to support every child in the UK, we would need to acquire much more funding," he said. Welsh children's cancer charity Latch recently withdrew funding for some blood disorder patients because their conditions were not medically defined as cancer, so they "fell outside the charity's current scope", a spokesperson said. In a statement, the charity said: "Latch is a charity that supports children with cancer, including leukaemia (blood cancers), not benign blood disorders." It said it was reviewing its remit due to the complexity of some disorders but it has been necessary to pause support while it updates its governing documents. Jasper's diagnosis came after "years of hospital visits, misdiagnoses, and watching him suffer without answers", Sophie said. It was frequently misdiagnosed as chest infections, meaning he was prescribed two to three rounds of antibiotics every month and often admitted to hospital between six to eight times a year. She said Jasper's weak immune system was normalised, but she knew in her gut something was wrong. The calls follow a family plea for stem cell donations to save three month of Dolcie-Mae, who has also been diagnosed with a rare blood disorder. Sophie said people often assume they cannot join the register because the Anthony Nolan register is only open to 16 to 30 year-olds, but there are other registers available. DKMS accepts donors up to 40 years old, while the Welsh Bone Marrow Donor Registry accept donors up to the age of 55. She said that other options could save lives, yet so many people simply don't know they exist. Also known as a stem cell transplant, a bone marrow transplant is a medical procedure that replaces damaged blood cells with healthy ones. Conditions that stem cell transplants can be used to treat include: Severe aplastic anaemia (bone marrow failure) Leukaemia – a type of cancer affecting white blood cells Lymphoma – another type of cancer affecting white blood cells. Multiple myeloma – cancer affecting cells called plasma cells Certain blood, immune system and metabolic disorders – including sickle cell anaemia, thalassaemia, severe combined immunodeficiency (SCID) and Hurler syndrome Source: NHS website There is also a misconception that the procedure to donate stem cells is taken from the hip bone, Sophie said. But in fact 90% of procedures can be taken via a peripheral blood stem cell, which is much like giving blood, while 10% of bone marrow donations are taken directly from the hip bone, according to the NHS website. Jasper has received his transplant but there is "still a very long way to go," said Sophie, at three weeks into their six month long treatment. Boy, 11, meets life-saving stem cell donor I woke from a coma to find my baby had been born Heartbreak at 'family-destroying' disease of girl, 11
