The first baby in the UK to receive pioneering gene therapy has thanked doctors who saved his life 25 years ago.
Rhys Evans was one when he was kept in a sterilised ‘bubble’ at Great Ormond Street Hospital (GOSH) to protect him due to a rare genetic condition that left him without an immune system.
Concerns sparked in 2001 when Rhys fell ill after his mother Marie stopped breastfeeding, prompting a succession of infections.
The then-child was flown to London by helicopter to see medical experts after doctors in Wales were unable to diagnose him.
It emerged Rhys, from Cardiff, was suffering from a rare genetic condition called Severe Combined Immunodeficiency, which left him vulnerable to even the most minor infection.
Doctors gave him a life expectancy of two years. He was kept in a bubble while everything passed to him – including toys, nappies and food – was sterilised to prevent him catching any illness.
Rhys’s parents Mark and Marie then agreed to experimental treatment to replace his faulty genes, making him the first in Britain to do so.
Within weeks, his body began developing its own immune system.
Rhys Evans was one when he was kept in a sterilised ‘bubble’ at Great Ormond Street Hospital to protect him due to a rare genetic condition that left him without an immune system
Rhys, who is pictured graduating from university, is now 25 and visited Great Ormond Street hospital to thank the doctors who looked after him
Rhys, now 25, returned to GOSH to mark the anniversary of his treatment and thank the staff who saved him.
‘I wouldn’t be here without the treatment I received at GOSH,’ he said.
‘Growing up, I’ve been able to live a normal life, go to school and university, see friends and plan for the future – things my family once couldn’t take for granted.
‘It’s incredible to see how 25 years on, gene therapy has helped so many children like me.’
Kimberly Gilmour, who processed Rhys’s cells in 2001 and now serves as chief of laboratory medicine at the hospital, described the hesitancy behind the breakthrough trial.
‘Before Rhys, we had never worked with fresh cells before, so it was quite daunting,’ she said.
‘His parents were in the office watching us go through the glass into the lab. We took the cells to the ward to Rhys, and we didn’t know if this would be a cure. We were delighted that he did so well.’
Since Rhys’s treatment, the hospital has delivered 35 different cell and gene therapies to more than 135 children with rare conditions.
Rhys, who works in a coffee shop in Minehead and at Butlins, continues to take antibiotics to keep his immune system running but has described himself as now ’95 per cent normal’.
GOSH is now a global centre of excellence for gene therapy and has treated more patients with the technology than anyone else in Europe.
