For most people, the thought of running a marathon is a daunting prospect. James Casserly, however, is not most people. At only 10 years old he lives with cerebral palsy and idiopathic juvenile arthritis in multiple joints. But on 30th October 2016 James, with the help of his trainer Mark Lacey, will take part in The Dublin City Marathon. James’ mother Vicki Casserly told Flexiseq about James’ remarkable story.
James’ arthritis mainly affects him…
through pain. James has a very high pain threshold but there are days when his knees and ankles can be really bad. Other days it will completely affect his mobility, the pain can make him feel quite ill. So it might be that he doesn’t have the energy to go out and play but some of his friends will come over and play with him. It also means James spends a lot of time in hospital. He rarely gets to do a full week in school because of the level of appointments and treatments. We make the best of the good days and the bad days we manage as best we can.
James loves being…
fit and active. He loves to swim, he plays frame football with his walking frame, he plays Football For All which is football for kids with disabilities. He’s in training in the gym with Mark and myself. He recently did a Paralympic Cross Country in school where the distance was apportioned to the disability of the child and he won that race. Sometimes it can be difficult for him to move but he knows that he benefits from it at a later stage.
Cerebral palsy has been part…
of his and our lives since he was very small. We’ve always taken the approach of ‘there is always a way to do things’. It might not be the same way as the person to your left or your right but there is a way to do it and we find it. We’ve tried to instill that in him. We all have our different strengths and challenges but we say to James that if there’s something he really wants to do then he’ll find a way to do it.
James is running to raise money for…
Barretstown. Barretstown is a camp with serious fun for children with serious illnesses. We went to the founding weekend of Barretstown, had a great time and asked him if he’d like to come back for a week in the summer. It was the first time he’d ever left me and I thought everyday I was going to get a phone call saying he wanted to come home. That call never came, instead he had a brilliant time.
We were plodding along…
with James on a host of medication and a local guy called Mark Lacey invited us down to his gym because he wanted to help James. We went to meet Mark – he and James got on like a house on fire. Mark is an athlete and he said he wanted to do a charity run with James. So we found a 5K run and wanted to raise a bit of money so asked James who he’d like to raise money for and he said Barretstown. We’ve done a lot of charity work over the years but James said Barretstown was really special to him. So the 5K turned into a 10K which turned into a half marathon that turned into asking ‘why not do the Dublin City Marathon?’
It wasn’t easy…
and we knew it was a huge undertaking for Mark as well as James. But it was something they both really wanted to do. So we decided to ask organisers of the Marathon and for the first time the Dublin City Marathon decided to let it happen. We originally set out to raise €10,000 and I think we’ve achieved about €26,000.
It won’t be easy but…
James lives and breathes watching any sport on TV. He participates as best he can, this year he got Sports Person of the Year in his class, he puts 100% effort into everything he does. But he doesn’t see why he can’t participate. He’s hoping to do it in about four hours.
We give James a positive attitude by…
letting James be James. If there are days when he wants to cry you have to let him. Give him a hug and be there for him. If there’s a day where he wants to do nothing that’s okay. I’ve been James’ full-time carer for a number of years now. Two years ago I was elected as a local councilor. My whole drive behind that was to improve our community for people with disability or illness and make our environments a more inclusive place to live. I try and support him in other ways, so if we’re out on a walk and there’s a footpath that a walking frame or a pushchair can’t get down I try and look around with a different pair of eyes which I know will make it easier for James and everyone in the community in the long run.
James started using Flexiseq because…
we were sent a sample and I showed my pharmacist who said it was fine as it wasn’t going to interact with any of James’ other medications. We started using it and I can only gauge how good it is by what James says but I asked him which gel is better and he points to the Flexiseq. He finds it gives him results. He uses it mostly at night and it’s a real comfort to him. At school he has an assistant, Cathy, who helps him put on the gel when he’s there. She actually suffers from arthritis and she’s noticed that by helping apply it to James her hands and fingers have been greatly helped.
To find out more about James’ story and donate to his Barretstown charity fund go to his Dublin Marathon page as well as finding him on Facebook.
To find out more about Barretstown go HERE.
