Clinical trial plea for young man with failing heart

A young man whose heart was seriously damaged while undergoing chemotherapy as a toddler fears he will die without a miracle cure.

Louis O'Brien-Smith, 21, has dilated cardiomyopathy, which doctors have concluded was probably induced by chemotherapy he underwent to treat childhood leukaemia.

Mr O'Brien-Smith, who is from Coventry, was listed as in urgent need of a heart transplant after an assessment in Birmingham on Thursday.

However, doctors stressed that a transplant is "a treatment, not a cure" and Mr O'Brien-Smith believes a clinical trial is his only hope of getting his life back.

"I feel like I'm running out of time," the 21-year-old told the BBC.

"Without [a clinical trial], I think I'll keep deteriorating and probably die. It's soul-destroying really."

Mr O'Brien-Smith was diagnosed with acute myeloid leukaemia when he was 18 months old, before relapsing after 10 months in remission.

After a worldwide search, no bone marrow match was found so he received "half a match" transplant from his father in 2005.

However, at the age of eight, he was diagnosed with severe heart failure, a probable result of the rounds of chemotherapy he endured.

"I just feel defeated. I'm now thinking about things I want to do before the inevitable," Mr O'Brien-Smith said.

"I feel like I'm just gonna die. It shouldn't be what a 21-year-old should be thinking."

Dilated cardiomyopathy is a disease of the heart muscle that makes the muscle walls become stretched and thin.

The thinner walls are weakened as a result, meaning the heart can’t contract properly to pump blood effectively round the rest of the body.

Mr O'Brien-Smith was listed for the transplant after undergoing an assessment at Queen Elizabeth Hospital in Birmingham.

He will return to the hospital next week and will not leave until he has received a transplant, which could take up to 14 months.

His mother, Chantelle Speirs, told the BBC: "Louis asked to come home to see his family and friends and go back [to hospital] next week.

"He knows this could be the last time he comes home, which is heartbreaking. We weren't ready for this news."

But she knows a heart transplant is a treatment and not a cure.

"If you are lucky your transplanted heart will have given you around 10 years," she said.

"It's highly unlikely he would be offered another one, especially as he is already a very complex case."

Illness has followed Mr O'Brien-Smith his whole life, and his mother said she never felt able to let her guard down.

"It feels like the odds are stacked against you," she said.

"I feel physically sick with worry. At times this literally feels like living hell.

"Louis has always lived on the edge of a cliff but this time it feels as if we are that bit nearer the edge.

"Looking back at that time of leukaemia and chemotherapy, it was living hell, but you switch to autopilot and children bounce back unbelievably.

"Now with the cardiac issues, things feel so much harder, because Louis isn't a small tot who is unaware, he's now a young adult who sometimes wishes he was never even born."

At only 4ft 10, Mr O'Brien-Smith's size will affect his treatment, including the need for paediatric tubes.

He also has signs of congestive heart failure, and has incredible difficulty walking as the effects of the chemotherapy have also eroded his bones.

"His X-rays show no ball-shaped sockets. Both sides have all worn away," Mrs Speirs said.

Doctors had been looking into a hip replacement for the 21-year-old, but the fragility of his heart has led them to conclude it would be "too risky" to operate.

"He's in excruciating agony because his hip bones are now no longer ball or socket, just jagged, worn, necrotic bones on bones. There are cysts in the joints where cartilage once lived," Mrs Speirs said.

"He wanted new hips more than anything. He says his biggest wish is to be able to walk his dog outside."

Mrs Speirs and her son are now pleading to anyone running a medical trial, or a treatment they think could help, to come forward.

"All you want is your child alive," she said. "I just hope that our prayers are answered.

"He has come so so far and now he has reached young adulthood, which has defied all odds.

"I can't let him give up, not when there are potential medical teams out there who might be able to give him the gift of life."

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