A five-year-old boy has had to live in isolation most of his life after being diagnosed with an immune condition that doctors say is "rarer than winning the lottery". Jacob, from Bishop’s Stortford in Hertfordshire, last year received a second bone marrow transplant in a bid to combat his haemophagocytic lymphohistiocytosis (HLH) and fix complications from his first transplant.
Mother Emily Chaney, 36, said everything had gone well with her pregnancy and it was not until her son was 15 months old that she and father James, 37, discovered something was not right. She said: “It wasn’t until Jacob was just over a year old that he developed a temperature that I just couldn’t bring down.
“After a week in a local hospital, Jacob was transferred to Great Ormond Street Hospital, where we found out that he had a very rare immune disorder. I didn’t know what to expect when we went to the hospital, but I certainly wasn’t prepared for how devastating the diagnosis would be.”
