This month, Mary and Malcolm, proud parents of Adam, tell us about his inspiring sporting achievements.
Our son Adam, who is 11 years old, suffers from a rare muscle-wasting disease called Duchenne Muscular Dystrophy (DMD), which is a life-shortening condition. Currently, there's no cure for DMD, although there are some very clever scientists working on some forms of treatment. Most of the time the science bits go over our heads, as a family we would rather live for today rather than the future.
Our ethos is also rubbing off on Adam; he continues to push the boundaries of a young disabled person who is in a wheelchair and as parents we are very proud of what he achieves and how he's inspiring others.
We heard Taekwondo could be incorporated into physiotherapy for children with DMD to make it a bit more exciting, so we thought let’s give it a go, we haven’t got anything to lose!
Adam joined Dorset Marital Arts with two of his abled-bodied friends. The three of them started working their way through the belts, however it was only Adam that persevered as his two friends decided Taekwondo wasn’t for them. We were so proud of Adams’s determination.
As Adam’s mobility reduced, he became more reliant on his wheelchair but this never prevented him in participating because the club just adapted and judged him on what he could do, not on what he couldn’t. We must give the club a massive round of thanks for pushing him to achieve his ultimate goal of becoming a black belt in Taekwondo.
To achieve a black belt as an able-bodied person is no mean feat, but when you suffer from a muscle-wasting disease the effort level just goes off the radar. Before the actual grading day, Adam had to pass a fitness test, which is no walk in the park!
Obviously, things like press-ups and sit ups are out of the question, so alternative exercises were set for him. Adam had to swim 250 metres, spar (box) for a set period of time in his specially made leg braces and lift some weights. You can’t explain in words what effort and amount of energy Adam had to use to pass this fitness test.
On the day of his grading, Adam needed to remember many ‘patterns’ – a set of moves against an invisible enemy - he had learnt over the last six years (can you remember what you did last week?). It was decided that Adam could do some of his patterns in his chair and others in his leg braces. You definitely need to be skilful to be able to combine manoeuvring a wheelchair with taekwondo patterns.
Although Adam has achieved his goal of achieving his black belt, he is continuing with taekwondo, and his aim is to go for his Dam 2.
As Adam’s condition gets worse, it is important to keep him active both physically and mentally. Not only does he do Taekwondo, he also attends Weymouth South Scouts, plays power chair football for Wessex Warriors and does the Junior Park Run on a Sunday Morning. Despite his disability he lives life to the full!
Those people who have met Adam know his passion/obsession is football. We think we can ‘blame’ Julia’s House a little bit for this by giving him the opportunity to meet players. Last Christmas manager Eddie Howe and his team, came into the hospice to meet the boys and staff. Adam and Regan challenged Junior Stanislas and the Little Wee Man (aka Ryan Fraser) to a game of FIFA. Adam is still blaming Junior to this day for making him lose…
Julia’s House has help us in many ways for example, Adam regularly attends Weymouth South Scout group, who have gone out of their way to make Adam as involved as possible within the group activities. This includes Coastering, attending camps and doing all those normal activities like abseiling, flying down a zip wire and the latest is paintballing.
We asked Juila’s House to support Adam in attending Scouts, which they have been more than happy to do. We have heard on the grapevine that the carers fight to ensure that their name is down to help Adam when the call comes in.
Recently Nurse Pete accompanied Adam on a 4-mile sponsored night hike with Scouts. It was great that when the Scouts presented a cheque for £1,300 to Julia’s House - everyone can see the benefits of what this type of fundraising can achieve.
Not sure what Adam’s next challenge will be, swimming with sharks love to see the Julia’s House risk assessment when we ask for support with that…
Anyone thinking of becoming a paediatric nurse of changing jobs should not be put off by the idea that Julia’s House is a scary place. Coping with the death of a child is the part of the job everyone focuses on and yet there is so, so much more to being a Julia’s House nurse.