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Last Updated: Thursday, 30 September, 2004, 12:49 GMT 13:49 UK
'Bubble boy' Rhys turns four
Rhys and Marie Evans
Rhys has now started going to school
When you are growing up, all birthdays are special, but Rhys Evans has more reason to celebrate than most.

Before he was a year old, Rhys spent weeks in intensive care, and months in a sterile "bubble" at London's Great Ormond Street Hospital.

He had a rare condition preventing him from developing an immune system.

But now the toddler from Treharris, south Wales, has just turned four, after becoming the first child in the UK to receive pioneering gene therapy.

Rhys' condition, called severe combined immunodeficiency (SCID), meant he had to live in sterile conditions or risk picking up a life-threatening infection.

The treatment adds in a correctly-functioning version of the single mutated gene which causes it.

He was kept in what they call a bubble, but it was more a sterile room
Marie Evans

Rhys' mother Marie said her son had been "genetically modified".

"They have extracted his bone marrow and implanted a synthetic gene," she said.

"Obviously the immune system has gradually grown then."

Father Mark Evans said they had been at the cutting edge of research.

"At the time, it was like asking us if Rhys would be a guinea pig," he said.

"They gave us a week to think about it, and we decided on having gene therapy."

Mrs Evans explained that Rhys, who has now started school, had first became ill when he was about three months.

Rhys needed to be kept in a sterile environment (home video pictures)
Rhys needed to be kept in a sterile environment (home video pictures)

"As soon as I returned to work and stopped breast feeding him, he gradually became ill and went on a rather slippery slope down to an intensive care unit.

"At four and a half months, he started having chest infections, and then he went into hospital in Prince Charles in Merthyr for a short stay.

"Then he caught a virus - a rather nasty bug in which you suffer from sickness and diahorrea.

"He didn't seem to be getting any better, and then unfortunately we ended up in an intensive care unit at UHW (University Hospital of Wales) in Cardiff with him for a month."

'Sitting duck'

Mrs Evans, who has now had a second boy Alex, said Rhys had not been kept in a sterile environment at the time.

"Basically he couldn't fight off any infection," she said.

Rhys needed to be kept in a sterile environment (home video pictures)
Rhys needed to be kept in a sterile environment (home video pictures)

"I will never forget the time the consultant said he was a sitting duck.

"If anyone came in with something that he was susceptible to, he was too ill to move."

Rhys was then transferred to Great Ormond Street for six months.

"He was kept in what they call a bubble, but it was more a sterile room," she said.

"There was a vacuum room which you went in once and washed your hands, and wore gloves, and aprons and mats."

She said it had been a difficult time for the family.

"I think people who had a prison sentence for six months probably had more visitors than us being 200 miles away. "

His treatment was funded by the charity Jeans for Genes, which holds its annual fund-raising day on Friday.

The appeal encourage people to wear jeans instead of work or school clothes and donate 1.

One baby in every 33 born in the UK is affected by a genetic disorder.

The appeal, now in its ninth year, has already raised over 18m towards research.




SEE ALSO:
Q&A: Bubble baby 'cure'
03 Apr 02  |  Health
Gene therapy trials halted
03 Oct 02  |  Health


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