A MOTHER of two boys suffering from the rare genetic condition, Hunter Syndrome, spoke of her joy this week following the decision to license a new wonder drug for use in the UK. Clare Stevens, of Badshot Lea, told The Herald how she expected her sons Oliver and Samuel, aged seven and five, to "get their futures back" once they start the lifelong treatment in April. The new drug, Elaprase, is hoped to prevent the onset of some aspects of the disease, which can cause organ failures, stunted growth and severe heart problems. Clinical trials of the drug began in the US with it reaching Europe in 2004. Although trials are now complete, the family have been waiting for it to be licensed in Britain - an ongoing battle that has seen support from friends, family and even local MP Jeremy Hunt. "We hoped to be receiving the drugs early last year, but unfortunately we were made to wait," explained Mrs Stevens. "The boys are going to get their futures back which is excellent because they are very lively to say the least. They will take the drug for the rest of their lives but they're both oblivious to it all really. I've told them that they're going to get a magic medicine." In reality, it might not be so magic for the boys, who will have to endure a four-hour infusion once a week via a Port-a-Cath attached under the arm, delivering the drugs directly to the heart. "When we start the treatment they're going to find it hard, but they're both very brave little boys and I'm so proud of them. Samuel is quite excited because he just thinks about being able to run faster and I'm happy that it will start undoing some of the damage which has built up within them already." She explained that both boys suffer from glue ear as a result of the syndrome and they are short for their ages owing to the disease's ability to stunt growth. They also have large stomachs, spleens and livers. However, Elaprase should help with these problems and prevent further, possibly disfiguring ailments, from arising. The condition, a hereditary metabolic disease stemming from the lack of a protein needed to break down certain molecules, primarily affects males. Although some women have been known to suffer from Hunter Syndrome, they tend to be carriers of the disease, often completely unaware that they could be passing on a potentially terminal illness to a son. "I had 19 weeks of feeling that I was the luckiest mother in the world with two healthy boys," she said, recollecting the period leading up to April 2002 when the boys were diagnosed. "Oliver was two and a half and Samuel was just 19 weeks old and it came as a huge shock. I'm just desperate to get the drug into them before any more damage is done," she continued. Mrs Stevens highlighted the work carried out by MP Jeremy Hunt in assisting them over the years and fighting their case nationally. "He's bent over backwards for us and has generally been an absolute star," she exclaimed. "Most of the rest of Europe has already started to use the drug, but the UK didn't want to before carrying out its own research and trials. Jeremy has been really pushing for it ever since I contacted him before he came to power and it's really lovely to have somebody like that to be such a wonderful source of support to us." Although Oliver and Samuel will both be able to receive the new drugs in April, Mr Hunt believes that they should get them "right away", as the decision has already been made. He said: "I was very pleased that after so much campaigning, Elaprase is to be licensed from April, although given the decision has been made, I don't see why the treatment can't start right away. "Samuel and Oliver are wonderful boys, but most of all they are lucky to have such determined and committed parents. I know their success will give hope to many parents with children suffering from rare degenerative diseases." While The Herald has been following their story since the diagnosis in 2002, the BBC has also been closely watching them and hopes to film their treatment in April. Mrs Stevens looks forward to showing off her directing skills when she is given a camera to take into hospital to film the event for BBC South Today. She added: "It's important for others to see it and it's nice that the BBC are genuinely interested in us." She hopes that the new drug will drastically lengthen the boy's lifespan, saying that she "expects to see them around" for many years to come. "I told them that they could look after me in my old age and they said they would take me out for a Happy Meal," she laughed. "That just goes to show the innocence of it all really. I want them to stay loved and cherished by everyone as so many local people have been fantastic in their support." As the family begins to prepare for the treatment and the new lease of life it will bring, Mrs Stevens feels nothing but pride for her two boys. "They're both so brave and I love them."
