A FARNHAM mother, who has two children suffering from a rare genetic condition, has been granted a 'wish list' by a Guildford-based radio station, which, she says, will restore some much needed "self esteem". Claire Stevens from Badshot Lea, whose two boys, Oliver and Samuel, have Hunter Syndrome, was granted her wish list after her husband Bob wrote in to Eagle Radio. He explained to them about the extraordinarily tough year Claire had had with the boys, especially after he himself became ill last year, and asked the radio station to grant the wish list to show her how much she was appreciated and loved. Bob said: "I have known about the Eagles' 'Christmas Wish' scheme for some time, but after such a difficult year I decided to contact them and tell them all about the stresses and strains Claire has had to put up with, especially with me being ill with cellulitis and septicaemia and off work for six months. Just in the last six weeks the boys have had an operation each and Claire has coped with it all. "I took on a new job in 2007, which keeps me away more than I would like, but Claire has never once complained. She has always just got on with it. She is incredible. Claire keeps everything together and I don't know what we'd do without her. I said to Claire once, 'why us?' and her response was 'why not us?' You can't argue with that and that just shows you how positive she is." Claire said: "The boys were diagnosed with the disease almost six years ago and it was expected that they would not survive beyond their teenage years. Oliver was two and a half and Samuel 19 weeks when they were diagnosed. "A new pioneering drug called Elaprase, which I knew would help the boys, started its trials in 2004, but it took until January 2007 before the drug was licensed in Britain and until April before it could be funded. "I was expecting the licence in 2006, but it just took such a long time and by the middle of 2006 I was struggling to keep on top of it all and went to see my doctor who said I was depressed. By that stage we had been fighting the disease for four years and I just felt desperate. I'm feeling much more positive now. "The licence came in April 2007 and we began administering the drug once a week via a Port-a- cath which was implanted under the arm in March. Enzyme Replacement Therapy takes four hours and although the boys don't like the needles, they have been so brave. "It has made such a difference to their lives. Their skin is so much softer now, the swelling in their stomachs has gone down, where their liver and spleen are back to their normal sizes and they have got so much more energy. They've started to be even more naughty, which is a sign of how much more energy they have. "Their fingers are squidgy now, the way fingers should be. Other people have remarked how their faces are changing too, as their features are gradually softening. Their noisy breathing, from their restricted airways has also got so quiet I now have to check to make sure they are still breathing! "It is so important for them to live as normal a life as possible. For the boys this has been a very positive year. "I'm learning how to administer the drug myself, which means we will be able to go on holidays without missing any treatment. It also makes me feel I am actively helping them to stay healthy. The faulty gene which causes Hunter's is passed on by the mother, which was always hard knowledge to bear. "I don't feel extraordinary. I'm just a mum who loves her boys. I feel very lucky. I've got so much support from Bob, family,friends and the community. And this drug is helping them. You have to believe that the drug will solve everything and give them a future. You have to believe and stay positive." Claire has three special wishes on her list: Foxhills is granting afternoon tea for two in the Manor House, as well as dinner for two in the Manor restaurant and an overnight stay with breakfast the following morning, Champneys Guildford is treating Claire and Bob to a full body Swedish massage each and goody bags and Philip Nash Photography in Farnham is donating Claire a makeover, photoshoot and a 12 by 15 canvas or framed portrait. GP Occasional Cars have offered to chauffeur them around to each of the events in comfort. Claire can use the wishes whenever she wants over the next year, however, there is no doubt in her mind which of the wishes she will take first. Claire said: "I'm really looking forward to the makeover. I don't get a lot of time to make myself look right and it will be so nice to have someone else do it. I'm hoping to take that as soon as I can. It will be good for my self esteem. "This wish was given at a time when I was feeling particularly low and quite exhausted after the boys' operations so it is a major boost just at the right time. My only wish had been to get treatment for my boys, so this has been a nice little bonus." The Herald has been following the Stevens' progress since 2002 and more recently the BBC has also taken an interest. South Today filmed the moment when Oliver and Samuel began their new treatment back in April. Their progress can be tracked at http://www.oliverandsamuel.com">www.oliverandsamuel.com
