Help for boy with ‘one in 10 million’ disease

Dino Price suffers from Takayasu arteritis which affects the major blood vessels in his heart and neck leaving him at constant risk of potentially fatal blood clots, collapse or even a heart attack.

Leading specialists at Sheffield Children’s Hospital had never seen his condition, which has no cure, but have managed to stabilise him and advise his parents on how to cope with the complaint which causes Dino’s major blood vessels to become inflamed.

Dino’s mother Julie, of Lodge Moor, said: “He’s absolutely mad on boxing and wanted to be a professional when he was older but doctors have told us that he can’t do sports because any injury could be fatal.

“His brothers and sisters are too scared to touch him – they keep wanting to play fight but I tell them they have to be careful.”

The eight-year-old has undergone six months of chemotherapy to reduce the infection in his blood, and is now on several drugs, including two injections each week, which his mum has to administer.

He said: “It’s really weird when they tell me I’m one in 10 million, I can’t really imagine that many people. The worst thing about it is I can’t go boxing any more, if I got hit then it could be really dangerous. I’m going to find some safer exercises.”

Dino, who has three sisters and one brother, has spent the last seven months being treated by the hospital’s team of expert paediatric rheumatologists – one of only a few in the field in the UK.

Daniel Hawley, consultant paediatric rheumatologist, said: “Dino’s case is one of the rarest I’ve ever seen – he really is one in 10 million. It is rare in adults and rarer still in children. If untreated or misdiagnosed it can be devastating.”