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Oliver Stevens was diagnosed with Mucopolysaccharidosis in April 2002 at 2 and a half years old. His baby brother, Samuel, was just 19 weeks old and it became clear very quickly that he was suffering from the same condition. Like any parent, we were stunned to find out our seemingly healthy little boys could be harbouring an illness so severe that it could cripple then kill them.
At Great Ormond Street when the MPS2 Hunter Syndrome had been diagnosed we sat and listened to the consultant, at my request, telling us everything that could happen to Oliver and Samuel. We sat waiting for the ‘but…’- It never came.
Our world continued to crash around us.
Enzyme Replacement Therapy was in the early stages of its trial. Every second of every minute of every hour of every day, this horrible incurable disease was building up in Oliver and Samuel’s bodies and gradually killing them. And there was nothing I could do about it. We had to sit and wait.
In 2004 the trials began in England but our boys were too young to be included. The goalposts seemed to be shifting-every time I thought we were closer to getting the treatment, timescales seemed to increase. Oliver had had his tonsils and adenoids out and grommets and hearing aids helped him to hear. He had his carpal tunnel operation to maintain the use of his hands. He was put on heart medication to take the pressure off his heart as chest infections made it work so hard.
Samuel had grommets inserted to aid his hearing at the age of 2. In 2006 he had more grommets inserted, a trigger thumb release and both boys endured a hydrocele operation.
Finally Elaprase, the Enzyme Replacement Therapy, was licensed in January 2007 and Oliver and Samuel were invited up to BBC breakfast tv to broadcast the news. In April 2007,after portacath operations to make infusions easier, and practically five years after diagnosis, the boys started their life saving treatment at Great Ormond Street Hospital. Every week they are hooked up to a machine for three hours, while the vital enzyme they are missing slowly drips into their bodies, undoing some of the damage that has been caused and doing a great job at preventing further life threatening damage.
We are so grateful to the scientists who developed the drug, to the hospitals who look after the boys,to the Government who are funding the drug (for now) and to the MPS Society who provide the lifeline for affected families and fund research, and to our friends and families who have supported us through some very dark years.
Oliver and Samuel are being given the chance to continue to be the lively, cheeky little boys they have become. They are full of energy and have huge beaming smiles and every time I see those smiles I know how lucky we have been.
We don’t know what the future holds, but at least we know we are going to have one.
For further information on the story of Oliver and Samuel please visit their website www.oliverandsamuel.com |