The family of a ‘one-in-10-million’ boy are living in constant fear of his ultra-rare condition which has left him stuck in a Catch-22 situation.
Dino Price suffers Takayasu Arteritis – a dangerous inflammation of the aorta which leaves him at risk of collapse, stroke, or his blood vessels bursting.
The eight-year-old is in desperate need of exercise to help his heart cope – but the incurable illness means he is restricted in what he can do.
Doctors at Sheffield Children’s Hospital had never seen his condition, and it is almost unheard of in a child.
Mum Julie, of Lodge Moor, Sheffield, who has learned CPR in case of cardiac arrest, said: “He’s on a lot of drugs including steroids so he struggles to walk far.
“He’s absolutely mad on boxing and wanted to be a professional when he was older but doctors have told us he can’t do sport because any injury could be fatal. His brother and three sisters are too scared to touch him.”
Dino has undergone six months of chemotherapy to reduce the infection in his blood, and is on a cocktail of drugs including two injections a week, which his mum has to administer.
Dino 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 is I can’t go boxing any more – if I got hit it could be really dangerous.”
Dino is being treated by Sheffield’s specialist team of rheumatologists, which formed only a year ago and is one of only a few children’s teams in the UK.
Dr Daniel Hawley, consultant paediatric rheumatologist, said: “Dino’s case is one of the rarest I’ve ever seen – he really is one in ten million. The condition is rare in adults and rarer still in children, and if untreated or misdiagnosed it can be devastating.
“He’s responding well to treatment, but we have to keep a close eye on him. We’ll be working with Dino to educate him about his diet, smoking and exercise – all the things that can exacerbate heart conditions. But the problem is it’s a Catch-22, because although it’s important to do exercise to maintain a healthy heart, he also has to be careful in the amount and type of exercise.”
Julie said: “He’s been so brave and has hardly complained once.”