He had to be put on life support and has faced multiple setbacks. ‘He’s had over 30 transfusions, chemotherapy and many other horrible medications.’
Lisa Letcher Senior Reporter and Paul Greaves Senior News Reporter
11:35, 19 Sep 2026
Albie Thomas, aged four, from Gloucester, is fighting a rare and life-threatening disorder after being taken poorly on a family holiday(Image: eyJpdiI6Im1zMDVtcnh3SkxkdkN4US8vOWp0dEE9PSIsInZhbHVlIjoiQStaVXlYZDBXblgzeG94TUQ3Qzd1U2Y1SnMra0lUWDVCTEJFVWhxVzlPaUlpd2I5SEtBRTdLa1NOWGpwSnZqR29UbWo0Zmd2bVNZc1JsaFkvR3B6S0E9PSIsIm1hYyI6IjFkNWQ3YTljZjk2)
The parents of a four-year-old boy are speaking out to raise awareness of a rare, life-threatening condition that has confined him to a hospital bed for months and turned their family’s life upside down.
Albie Thomas was struck down during a family holiday in Torquay in June. What began as a cold and fever rapidly escalated, landing him in intensive care on life support at Bristol Children’s Hospital.
He was diagnosed with hemophagocytic lymphohistiocytosis (HLH) which is a rare autoimmune disorder where a common virus, such as Epstein-Barr (EBV), triggers the immune system to attack its own healthy tissues and organs.
Albie was due to start primary school this month. Instead, he faces an uncertain future and many more months of complex treatment.
“He was put on life support and the consultants were contacting other consultants all over the country to try and save his life,” said his grandmother, Yvette.
“He’s had over 30 blood and platelet transfusions, chemotherapy and many other horrible medications to keep him stable. He has had a relapse already and may need a bone marrow transplant. We won’t know until the end of September when he’s weaned off the steroids.”
(Image: eyJpdiI6IkcxM2taZEl0ZUgvOHAyMk5LWllhM1E9PSIsInZhbHVlIjoiVTlYcGJqVnNmZ2J2dC9JZHNWZFJoTytmdXQ5Zk1tQTJoeFlhSkh0aTlsaThBY1p4ZzE4YytyajVEaVhsMXNGYU5LVXBuV2dDNWJ3T21WSitpZ0hySlE9PSIsIm1hYyI6ImVhN2NiMDZkOTkw)
HLH is exceedingly rare in the UK, leaving families feeling isolated. Because September marks Histio Awareness Month in the US, Albie’s family is using their experience to shine a light on the disease in the UK.
Since being admitted over 70 days ago, Albie has faced multiple setbacks, including a relapse. His parents, Adam and Connie, have been by his bedside around the clock while family members care for their 14-month-old daughter, Honey.
Connie recently shared an update on Albie’s progress, saying “This week Albie should have been starting his journey into big school. Instead, we’re still here in hospital waiting to find out if he needs a bone marrow transplant. We’re in the process of very slowly weaning his medication to see how his body copes, but there is always the possibility he could relapse again.
Albie pictured with his parents and baby sister(Image: eyJpdiI6ImZSTmNPT2J3Z05LZEZWU2o2K3dIN1E9PSIsInZhbHVlIjoieUxmeXJkU2N2dmp3UTdJZEVreFIyRDluQXZBK0J5S1hTVnBsZmhUNkpqZmJyS2hmS3FhR2R1SEVzbDY2YXVuMjR5bDA5Z2pZMHZXSm10eExubHg5WUE9PSIsIm1hYyI6IjlhYTZhMzc4Yzg2)
“Honey, Adam, and I have all been tested as potential bone marrow matches. While Honey would likely be a match, the thought of putting a 14-month-old through that is daunting. Thankfully, doctors have also found 15 potential donor matches worldwide. If he needs a transplant, it may happen at the end of November – possibly in London – which means we could be in the hospital over Christmas.
“Despite the muscle weakness from the steroids, Albie is getting stronger every day. Daily physio is helping him relearn to stand, crawl, and walk. It’s hard for a four-year-old to understand why he can’t do what he used to, but he’s doing amazingly, and we’re so proud of him.”
To relieve the immense pressure on the family, friend Zoe Taylor launched a GoFundMe campaign to cover travel costs, living expenses, and lost income while Adam and Connie are unable to work. The fundraiser has already raised more than £14,000.
Albie should have been starting school this month but instead he’s confined to hospital(Image: GoFundMe)
“Albie should be going to birthday parties, playing with dinosaurs, and preparing for school,” Zoe said. “Instead, his tiny body is fighting with everything he has. No parent should have to worry about finances when going through this hell – their focus needs to be entirely on being by Albie’s side.”
Connie added: “It’s a strange place knowing we could be here for another five weeks or another five months. It’s a long waiting game, and we’re just praying for the best outcome for our little boy. Thank you to everyone for your support – we really do appreciate it.”
To help with the fundraiser visit Gofundme.