`Gene therapy' gives little Rhys fresh hope.Byline: Jessica Flynn PIONEERING gene therapy has helped toddler Rhys Evans reach his second birthday - a milestone his parents feared they would never celebrate. ``Boy in a Bubble'' Rhys, from Treharris, near Merthyr Tydfil, suffered a rare genetic disorder of his immune system, which leaves one in 50,000 babies without natural defences to infection. A charity then paid for the groundbreaking treatment at London's Great Ormond Street Hospital The Great Ormond Street Hospital for Children (GOSH) was founded in London in 1852. There are a few institutions which pre-date it as providing care for children, although not in-patient beds. . And this week the youngster met his hero Bob The Builder <noinclude></noinclude> <noinclude></noinclude> Bob the Builder is a children's television character created by Keith Chapman. Bob appears as a construction contractor in a stop motion animated programme with his colleague Wendy, various neighbours at a special party, unlike his first birthday which he spent being fed through tubes. Mum Marie said: ``Rhys is fine now, walking and talking which we never thought we'd see - when he was first diagnosed he was given a week to live.'' Doctors discovered Rhys had Xlinked severe combined immunodeficiency disease Noun 1. severe combined immunodeficiency disease - a congenital disease affecting T cells that can result from a mutation in any one of several different genes; children with it are susceptible to infectious disease; if untreated it is lethal within the first year or , which affects only 100 children in the UK. Mrs Evans said: ``We've spent months in hospital with Rhys in intensive care for weeks. It was absolutely devastating. ``The only suitable bone marrow donors were in America, then we were offered gene therapy treatment and we decided to go with that so Rhys would not have to go through chemotherapy. ``The charity, Jeans for Genes Jeans for Genes was launched in 1996 and is a national appeal where everyone across the UK is asked to throw out the usual dress rules, jump into their jeans and donate £1 at schools or £2 at work to help children with genetic disorders. , paid for the treatment and they have been brilliant. ``Within six months of his treatment, for the first time Rhys was able to play with pals without fear of terminal infection and finally return home.'' Today - which is Jeans for Genes Day - the chatty toddler was at Plas-yFelin Infants' School in Caerphilly doing a sponsored walk for the charity, which raises the bulk of its income from bosses allowing staff to wear jeans to work in return for a pounds 1 donation. Mrs Evans added: ``Now he loves playing with other children, which he couldn't do before, but if it wasn't for Jeans for Genes Rhys may not be here today.'' CAPTION(S): BIRTHDAY BOY Rhys; Evans, who has recently celebrated his second birthday. |
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