Jenson
It amazes me how life can change in a blink of an eye. Unexpected challenges can make us crumble, feel distraught, scared of what is to come and panic at the thought of going forward.
This is what happened to us when our son was diagnosed with Duchenne Muscular Dystrophy on his 1st birthday.
From when he was a few months old, Jenson has always been happy, creating so much fun and laughter in our lives. When I was heavily pregnant, he proved how determined he was with constant strong kicks. During my labour he made every effort to kick the fetal monitor off my baby bump – he clearly wanted to be known and to be out in the world having fun.
We knew Jenson was struggling with his mobility in his first year. When lifting him up from his high chair, it would feel as though he could slip through my hands. Jenson commando crawled and could not lift his
stomach off the floor and struggled to pull himself up to stand, even leading up to his first birthday.
Thankfully we had a fabulous GP and Health Visitor who listened to our concerns and within a few weeks Jenson had blood tests. The bloods were taken one Friday morning at our local hospital and, later that afternoon, I picked up a phone message to say we had to attend the hospital on Monday. Nothing more
was given in that message other than the fact they had realised it was going to be Jenson’s first birthday, but they still wanted to see us.
I went into panic mode while my husband was calm and said it could not be due to the blood results; surely the bloods would not have been checked from that morning.
On Jenson’s birthday, we arrived at hospital and were given the devastating news that he had the life limiting condition Duchenne Muscular Dystrophy. It would cause his muscles to waste away and would affect his mobility, heart and lungs. There was no cure and we felt doomed.
The first few years were so difficult, but we became stronger and more determined for Jenson to have positive parents. We wanted to enable him to have plenty of wonderful opportunities. Jenson certainly brightens our days and we learn so much from him. At the moment he is a very determined 9-year-old who is completely unaware of his condition. He knows he has mischievous muscles and daily they ache and cause him pain. However, he loves life to the full and enjoys challenges and overcomes many difficulties.
Jenson decided he wanted to drive his new power chair to his hydrotherapy session at The Chamwell Centre. Although he cannot swim unaided, he loves his time in the water and had already packed his own swim bag. When we explained to Jenson that after his hydrotherapy session, he then had a Scouting parade for St. George’s Day at the Gloucester Cathedral, he declared that we could travel there afterwards. This would be a 10.3-mile round journey which would mean we would have to walk that distance with Jenson in his power chair.
We consulted Google Maps and the weather forecast. The day was sunny and his chair was fully charged, so off we set. Jenson loved the journey and went way in front with great confidence. He knew the route and required little supervision. It was amazing to watch Jenson with his great determination.
First stop was the hydrotherapy session which Jenson thoroughly enjoyed. In the water he is able to jump and hop around, something which he cannot do on land due to his mischievous muscles being too weak. The water is so warm that it helps his aching muscles and supports his body so he can carry out jumping activities at ease. The water also enables Jenson to relax while his physiotherapist can help him with stretches. Jenson has been on a huge journey since starting with The Chamwell Centre. At first, he hated being in the pool and had extreme anxiety. With plentiful reassurance he now loves splashing everyone, including those on poolside, and he can now swim a length with armbands. Jenson has reached the stage where he will be having one to one swim lessons and we eagerly await to see how he will flourish. He loves these sessions so much that he can’t wait for them. He packs his own bags and keeps asking how long it is until his session. Such a turn around and you can see the confidence these sessions have given him in the water.
We would love to see him swim more freely, even if it is with arm bands, without someone by his side. We have since paid for him to have lessons, with a goal to have him swim a longer distance before our holiday next year. a goal to have him swim a longer distance before our holiday next year. Jenson has really taken to the staff who provide his care at the Chamwell Centre. His Physio, who helps him in the pool with his stretches, has known and treated Jenson since his diagnosis. They are so supportive and you can see what a good relationship they have with him. Jenson enjoys their fun company and Jenson provides them with lots of smiles, chatter and cheeky, mischievous behaviour.
At the end of the day, Jenson is able to learn to swim, relax, have fun and get the stretches
he needs. It is a wonderful centre with wonderful staff and we cannot recommend it enough. It is a real positive experience for Jenson and everyone involved.
Who knows what the future will bring? We have become aware that it is so important to
live for each day and to have fun along the way. We have learnt so much, thanks to
Jenson’s positive and determined outlook on life.
Chantal Whitehouse
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