How an in-gene-ious treatment saved Rhys

How an in-gene-ious treatment saved Rhys

Sep 30 2010 by Kathryn Williams, South Wales Echo

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TEN-YEAR-OLD Rhys Evans will be celebrating his birthday today by thinking of someone else – the charity that helped save his life.

Rhys, from Nelson, was the first child in Britain to be cured by gene therapy after he was born with SCID – a severe combined immunodeficiency – which meant he had no resistance to infection. Left untreated, the condition would have killed Rhys before his second birthday – even simple germs like a cold could have killed him.

Rhys’s mum and dad, Marie and Mark, still remember the time they spent with their little boy in Great Ormond Street Hospital, who now is like any other 10-year-old, building Lego and teasing his little brother Alex.
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Mark said: “Rhys was just three months when he kept getting ill all the time, just after Marie stopped breastfeeding him, the doctors tried lots of different drugs, but nothing would work.

“The doctors at the University Hospital of Wales in Cardiff were stuck so they rang Great Ormond Street, who wanted him to come up.”

Rhys was sedated for weeks until the paediatric doctors proposed trying gene therapy on him, instead of the usual bone marrow transplant.

Despite initial concerns, Marie and Mark decided to go ahead with the therapy, and now Rhys, who attends Ysgol Bro Allta in Ystrad Mynach, is 99% well, although he needs daily injections to keep his immune system strong.

Mark said: “After the therapy he was kept in isolation, we had to wear special boots, mask, hat and gloves and enter a special room to get rid of all the dust and germs from our clothes.

“After Rhys came out of hospital, we couldn’t really take him out to shopping centres or parties, but he was able to start nursery and then full-time school.

“He has had chicken pox but was able to fight that off himself, which is really pleasing. We have been a little bit overprotective, but we’ve had to be.”

But Rhys, who turns 10 today, is as active as any other child his age, attending after-school dance classes, and even has a keen interest in science and playing with his Lego.

He said: “Sometimes I have to put the cream on my legs when I have the injections, and it’s a little bit scary having a big needle, they may stop in the summer so I can play longer outside.”

Jeans for Genes is the UK children’s charity that aims to change the world for children with genetic disorders. Now in its 15th year, Jeans for Genes has raised a staggering £35m.

Jeans for Genes Day is tomorrow and invites everyone to wear their jeans to work or school in return for a donation http://www.jeansforgenesday.com

The money raised will help fund vital care and support services for children and families affected by genetic disorders, as well as research.

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