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Overcoming childhood arthritis

Reuben was diagnosed with childhood arthritis, also known as juvenile idiopathic arthritis (JIA), aged 11.

His mother, Ingrid, tells us about their experiences with the condition, why supporting Sparks is so important to them and where Reuben is today, representing the UK in sailing.

“The onset of Reuben’s arthritis was easier to spot in hindsight than it was at the time. We thought swollen knees were down to sports, and irritability down to school – nothing out of the ordinary for a 10-year-old.

But by August 2006, it dawned on us that something was wrong. At a ‘fun run’ Reuben fiReuben's brother Finn, dad Paul and mum Ingridnished miles behind the others, many of whom were several years younger. His swollen knees began to concern us.

“Medical research is the starting point to help kids fulfil their potential in the future and shine in their chosen pursuits, just like Reuben has.”

After fruitless visits to different GPs, we were eventually referred to a specialist orthopaedic consultant. By the time the appointment arrived, Reuben was unable to get out of the bath or walk up the stairs properly.

Getting a diagnosis

Eventually we got a diagnosis of juvenile idiopathic arthritis. At this point, his knees, ankles, toes, elbows, shoulders, fingers, wrists and jaw were all inflamed. The name of the condition gave us no clues. We were told it was ‘idiopathic’ (ie we don’t know where it comes from), ‘polyarticulate’ (ie it’s in loads of joints) and ‘juvenile’ (ie Reuben sailing on the waterhe’s a kid).

Reuben was admitted to hospital for treatment and, once home, started life with Methotrexate, a type of cancer chemo drug which he took once a week. We were advised to give it to him on Friday evening so that he would have the weekend to recover. The drug made him throw up and feel horrible.

Success as a sailor

As Reuben was no longer able to play team sports, we tried to find a form of exercise to help him rebuild his wasted muscles. Paul, his dad, is a keen sailor and persuaded Reuben to try sailing, despite his fear of water. By the summer of 2007, Reuben’s joints were still swollen and the consultant decided to try him on stronger anti-TNF drugs, an alternative to Methotrexate.

“If it hadn’t been for the medication I’m on now, I wouldn’t have been able to do any sport. I am now representing my country at the 2011 Laser Radial Youth World Championships in France”

The effect was instant. Within ten days, Reuben was a different person. The tiredness and tearfulness had gone and we haven’t looked back since. Some stiffness remains, and he’ll never be able to straighten his arms completely, but his joReubenints have been free of inflammation for four years now.

Reuben’s consultant Dr. Ramanan and his team in Bristol have been incredible. They were supported by Sparks to investigate Uveitis, an eye condition that can affect children with juvenile idiopathic arthritis which, if left untreated, can lead to blindness. If there is anything we can do to further support Sparks work, we will.

Through it all, Reuben stuck with his sailing. Physically, it has given him the motivation to exercise but also gives him confidence. The camaraderie when they come off the water after six hours of battling wind, waves and the racecourse is a joy to behold.

National success

Reuben has been fortunate enough to continue to do well. He has won both regional and national events, and is now in the top three in his age group for sailing. We hope that he will be selected for the RYA Youth Squad to represent the UK in the future.

We support Sparks because they fund incredible research to help change the lives of boys like Reuben. We’re really pleased to promote the wonderful work of this charity to help children overcome their health problems. Medical research is the starting point to help kids fulfil their potential in the future and shine in their chosen pursuits, just like Reuben has.”

Reuben says, “I could barely walk upstairs when I first got arthritis when I was 11.

If it hadn’t been for the medication I’m on now, I wouldn’t have been able to do any sport. I am now representing my country at the 2011 Laser Radial Youth World Championships in France.

I know what it’s like as a kid to worry about losing your eyesight if your arthritis goes to your eyes. I know what it’s like not to be able to run around with your friends when that’s all you want to do. I will do what I can to help any charities that try to help those who are developing treatments that really work.”