Hi, my name is Chloe, and I’m raising funds to support my three-year-old son, Elijah, and our family as we face an incredibly difficult journey.
At the end of October 2025, Elijah first became unwell with what doctors believed was a urinary tract infection (UTI). By November 2025, his condition had worsened and we took him to the Royal Glamorgan Hospital. It was there that his symptoms escalated further. Elijah refused to eat and drink and wasn’t passing urine, which meant he had to have a catheter inserted. His tummy became distended and swollen, and doctors later found this was due to an enlarged liver and spleen.
Despite treatment, Elijah’s health continued to decline and he became critically unwell. He developed a widespread rash, persistent high fevers, and stopped responding to medication and treatment. His condition deteriorated rapidly.
Elijah was then blue-lighted from the Royal Glamorgan Hospital to Noah’s Ark Children’s Hospital in Cardiff, where he underwent urgent and extensive investigations, including blood tests and lumbar punctures, to rule out multiple possible causes.
Following this, Elijah was diagnosed with Primary Haemophagocytic Lymphohistiocytosis (HLH), a very rare and life-threatening immune disorder. HLH causes the immune system to become dangerously overactive, attacking the body’s own organs instead of fighting infection, and can be fatal if not diagnosed and treated early.
Further testing showed that Elijah’s HLH is caused by XIAP immune deficiency, a rare inherited genetic condition (X-linked inhibitor of apoptosis protein deficiency). XIAP plays a vital role in controlling inflammation and regulating the immune system. In children with XIAP deficiency, the immune system cannot regulate itself properly, leading to severe inflammation, recurrent infections, and conditions such as HLH. Because of this underlying genetic disorder, a bone marrow transplant is the only long-term treatment option to give Elijah the best chance of a healthy future.
In December 2025, Elijah underwent further treatment to help stabilise his condition. He had a Hickman line inserted, allowing medication to be given safely and providing easier access for blood tests. He then received a short course of chemotherapy, alongside steroids, immunosuppressants, and multiple other medications, to calm his overactive immune system and help keep him stable while preparing for the next stage of treatment.
Before the transplant can take place, Elijah will need to undergo intensive chemotherapy to prepare his body and immune system for the bone marrow transplant. This is an incredibly intense stage of the process and comes with a great deal of uncertainty.
The next stage of Elijah’s journey will be at the Great North Children’s Hospital in Newcastle, where he will undergo his bone marrow transplant. We have been told we will be based in Newcastle for around three to six months. As we live approximately six hours away from home, this means a long period away from family, work, and normal life, which will inevitably place a financial strain on our family.
To protect Elijah and reduce his risk of infection, my partner Kyle and I are both currently out of work so that we can isolate him from anyone who may be unwell. Keeping Elijah safe is our absolute priority, but this has already had a significant impact on our household income, alongside the weeks and months we will need to spend away from home. Any support received would go towards helping us keep on top of everyday essentials, such as household bills, food, and general living costs, while we focus fully on Elijah’s care, treatment, and recovery. It would help ease some of the pressure during an already overwhelming time.
At an age where he should be in nursery, playing with friends, and surrounded by family, Elijah has spent much of his time in hospital, unable to see loved ones and missing out on the simple joys of childhood.
Kyle and I have set this page up knowing it isn’t something we would usually do, as we have never been a family to ask for help. We are not expecting large donations, but with the months ahead and the challenges of being so far from home, any support will help ease the strain and allow us to focus fully on supporting Elijah through treatment and recovery.
Even if you’re unable to donate, sharing Elijah’s story helps raise awareness of Primary HLH and XIAP immune deficiency, which means just as much to us.
Any donations that we are fortunate enough not to need will be donated to Noah’s Ark Children’s Hospital Charity and LATCH, who have been incredible throughout this journey. Both charities have shown our family so much kindness, support, and care, and we would love to give something back to help support other families facing similar situations.
Thank you so much for taking the time to read our story and for supporting Elijah and our family.
At the end of October 2025, Elijah first became unwell with what doctors believed was a urinary tract infection (UTI). By November 2025, his condition had worsened and we took him to the Royal Glamorgan Hospital. It was there that his symptoms escalated further. Elijah refused to eat and drink and wasn’t passing urine, which meant he had to have a catheter inserted. His tummy became distended and swollen, and doctors later found this was due to an enlarged liver and spleen.
Despite treatment, Elijah’s health continued to decline and he became critically unwell. He developed a widespread rash, persistent high fevers, and stopped responding to medication and treatment. His condition deteriorated rapidly.
Elijah was then blue-lighted from the Royal Glamorgan Hospital to Noah’s Ark Children’s Hospital in Cardiff, where he underwent urgent and extensive investigations, including blood tests and lumbar punctures, to rule out multiple possible causes.
Following this, Elijah was diagnosed with Primary Haemophagocytic Lymphohistiocytosis (HLH), a very rare and life-threatening immune disorder. HLH causes the immune system to become dangerously overactive, attacking the body’s own organs instead of fighting infection, and can be fatal if not diagnosed and treated early.
Further testing showed that Elijah’s HLH is caused by XIAP immune deficiency, a rare inherited genetic condition (X-linked inhibitor of apoptosis protein deficiency). XIAP plays a vital role in controlling inflammation and regulating the immune system. In children with XIAP deficiency, the immune system cannot regulate itself properly, leading to severe inflammation, recurrent infections, and conditions such as HLH. Because of this underlying genetic disorder, a bone marrow transplant is the only long-term treatment option to give Elijah the best chance of a healthy future.
In December 2025, Elijah underwent further treatment to help stabilise his condition. He had a Hickman line inserted, allowing medication to be given safely and providing easier access for blood tests. He then received a short course of chemotherapy, alongside steroids, immunosuppressants, and multiple other medications, to calm his overactive immune system and help keep him stable while preparing for the next stage of treatment.
Before the transplant can take place, Elijah will need to undergo intensive chemotherapy to prepare his body and immune system for the bone marrow transplant. This is an incredibly intense stage of the process and comes with a great deal of uncertainty.
The next stage of Elijah’s journey will be at the Great North Children’s Hospital in Newcastle, where he will undergo his bone marrow transplant. We have been told we will be based in Newcastle for around three to six months. As we live approximately six hours away from home, this means a long period away from family, work, and normal life, which will inevitably place a financial strain on our family.
To protect Elijah and reduce his risk of infection, my partner Kyle and I are both currently out of work so that we can isolate him from anyone who may be unwell. Keeping Elijah safe is our absolute priority, but this has already had a significant impact on our household income, alongside the weeks and months we will need to spend away from home. Any support received would go towards helping us keep on top of everyday essentials, such as household bills, food, and general living costs, while we focus fully on Elijah’s care, treatment, and recovery. It would help ease some of the pressure during an already overwhelming time.
At an age where he should be in nursery, playing with friends, and surrounded by family, Elijah has spent much of his time in hospital, unable to see loved ones and missing out on the simple joys of childhood.
Kyle and I have set this page up knowing it isn’t something we would usually do, as we have never been a family to ask for help. We are not expecting large donations, but with the months ahead and the challenges of being so far from home, any support will help ease the strain and allow us to focus fully on supporting Elijah through treatment and recovery.
Even if you’re unable to donate, sharing Elijah’s story helps raise awareness of Primary HLH and XIAP immune deficiency, which means just as much to us.
Any donations that we are fortunate enough not to need will be donated to Noah’s Ark Children’s Hospital Charity and LATCH, who have been incredible throughout this journey. Both charities have shown our family so much kindness, support, and care, and we would love to give something back to help support other families facing similar situations.
Thank you so much for taking the time to read our story and for supporting Elijah and our family.
Organizer
chloe evans
Organizer