In April this year I will be facing my biggest physical challenge ever and running the Brighton marathon. I am running it for those who suffer from the debilitating disease arthritis, especially children and hoping to raise some money for Versus Arthritis. And here is the reason why…
You may think of arthritis as something that “old” people have but that is simply not the case. My son was only 2 years old when suddenly he became ill. We spent several months in and out of hospital not knowing what was wrong with him, he’d have temperatures of 40-41 degrees which wouldn’t come down with Calpol or Nurofen until he’d had several
doses, he lost weight and was lethargic. It was so painful to watch his friends come over and run around while he could barely move off the sofa.
After a Christmas of observing him not getting better we took him to the doctors and said that it had gone on too long and we needed to
know what was wrong with him. He was admitted to our local hospital for tests and on 1 January 2006 he was diagnosed with Systemic Onset Juvenile Idiopathic Arthritis which used to be known as Stills Disease. At that point we felt positive that he was under the care of Great Ormond Street Hospital and would get better. We were told not to read
what was on the internet as it could be exaggerated but I don’t think anything could have prepared us for what we faced ahead.
To briefly explain 1 in 1,000 children in the UK under the age of 16 are living with Juvenile Idiopathic Arthritis, of which 10% have Systemic Onset Juvenile Idiopathic Arthritis. Children with Systemic Onset Juvenile Idiopathic Arthritis have arthritis in their joints but the added complication of systemic symptoms throughout the body such as fever, rash and inflammation of organs for example the liver and spleen. Left untreated they are also at risk of a life-threatening complication called Macrophage Activation Syndrome (MAS).
It is fair to say that Samuel had a rocky childhood health wise, we’d try drug after drug in the hope that he would respond to one of them but really and truthfully the only thing that kept his disease under control
was steroids. They really are a wonder drug but are not without their pitfalls. They are not a long-term solution and their side effects harsh. After trying every drug under the sun to no avail Samuel had a stem cell transplant (bone marrow) in Spring 2008. This was a drastic move but when you are desperate for your son to be better you will try anything. Other children had been through this procedure for arthritis and it was to try to “reset” the immune system and hopefully grow a new good immune system.
Samuel stayed in hospital for around 7 weeks for the procedure but needed a year off school as he was unable to mix with children and indeed people as there was a high risk of infection. He also managed to break his femur spending a further 6 weeks in traction at our local hospital.
We were pleased that he went into remission following the transplant but sadly 18 months later he relapsed and the arthritis returned as
aggressively as it was before. I think the word devastated doesn’t describe how we felt at that point. He was back on the drugs he’d tried
previously but they seemed even less effective than before.
We were tested for being possible donors for another transplant but Samuel’s consultant told us that there was a drug that he could try as our last ditch attempt before going down that road again. He said that for 90% of patients it was effective but for Samuel he thought there was a 50/50 chance but worth a shot. That was nearly 10 years ago and
we haven’t looked back since. Samuel is one of the lucky ones. He goes to GOSH every 7 weeks to have the drug intraveneously but that is a small price to pay. He has no symptoms at all and is doing very well. We see other children at the hospital who are not so lucky.
The money I raise will go towards research studies specifically for children with juvenile arthritis.
Thank you for taking the time to read my story and I hope you are able to spare some money to help raise funds for a very worthy cause.