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Great escape for boy in a plastic bubble

A year ago Rhys Evans's world was the interior of a sterile plastic bubble.

The baby boy had no immune system and his parents feared that every day may be his last.

But yesterday Rhys was free of his germ-free bubble and out playing in the park like any other 18-month-old after a pioneering gene therapy was declared a complete success.

After almost a year of hospital therapy, he can now go outdoors, get himself dirty and go home to his own bed.

He was sealed off from the outside world after doctors diagnosed a rare congenital disorder. Even the most ordinary infection could have killed him.

He was denied even a cuddle from his mother and father - and doctors told Mark and Marie Evans that Rhys might not live to see his first birthday.

But the miracle for which they had prayed arrived in the form of a treatment never before used in this country.

'Now we live at home like a normal family,' said Mrs Evans, 31. 'He can walk and run around like any toddler.'

Mr Evans, 40, said: 'We can't do enough for him. We're over the moon and really proud to have our son back.'

Rhys, from Cardiff, had appeared to be normal until he was four months old and stopped breastfeeding.

Then his health deteriorated, his weight dropped and he caught chest infections that antibiotics could not shift, said Mr Evans. 'At the age of fouranda-half months he was just skin and bone, too weak to hold his head up,' he added.

Eventually Rhys was transferred to Great Ormond Street Hospital in London. Doctors diagnosed the genetic condition X-SCID - Severe Combined Immunodeficiency Disorder.

Patients are not expected to live beyond two years without treatment and can be kept alive only in totally sterile conditions.

Mr Evans, who gave up his job with a gas company to care for Rhys, says it was hard to cope with the anxiety caused by the illness. His wife, a teacher, said they were 'devastated' by the diagnosis.

Because Rhys did not have a sibling who could donate bone marrow they had to wait more than two months for the results of a worldwide search.

But just as they were told of a potential donor in America, they discovered a British team were ready to offer an experimental gene therapy.

The couple faced a tough choice but decided on the therapy because the transplant also meant chemotherapy.

Mr Evans said: 'I did not want to see my child go through chemotherapy because of the effects on his fertility, the loss of hair and the other side effects.'

The gene treatment began last summer and in the last six months Rhys has become the normal little boy they dreamed of. He returned home in time for Christmas and by February his blood results were almost normal. He stopped taking medication to boost his immune system six weeks ago.

Dr Adrian Thrasher, who led the gene therapy team, said they were 'ecstatic' about Rhys's progress.

But he added: 'Rhys will be followed up for years and only long-term can we compare the outcome of gene therapy with other patients who have had transplant procedures.'