Dexter was just 15 months old when our childminder recommended we take him to the health visitor. He'd always been slow to learn who to walk so at first I wasn't worried as I just thought all children develop in their own time and as our first child we had nothing to compare him to.
The health visitor suggested we saw a physiotherapist who could get a better understanding of what was happening so every two months we would take him along. During this time Dexter started to walk but he was still struggling to lift himself off the floor so in May last year we were referred to peadatrician at East Surrey Hospital in Redhill , it was the day before my birthday and I didn't realise at the time that no birthday would ever be the same again.
The peadatrician said Dexter was showing the Gowers' manouver - a medical sign that indicates weakness of the proximal muscles. A week later came confirmation of the worse news, it was Duchenne Muscular Dystrophy - a fatal neuromuscular condition caused by the lack of a protein called dystrophin which results in progressive muscle weakness. One in 3,500 boys is born with Duchenne muscular dystrophy in the United Kingdom each year and their average lifespan is just 20 years.
We were devasted. I'd never heard of the disease before and I didn't think I'd be able to go on living. It was the worst birthday.
After the diagnosis we threw ourselves into caring for him. Dexter is three now and has continued to improved physically, walk further and be more independent but there is a much increasing gap between him and his peers. He does not jump, run or climb easily and for a young boy this is awful to see. All children should be able to run around and go adventuring and Dexter has so many restrictions placed on him because of his condition– I just want him to have normal childhood as possible, but Duchenne has robbed him of that.
It has also had a massive impact on our family life. We have had to move house, which we were planning to anyway, but this accelarated the process as we needed to find a house with good sized land to the side so we can build an extension for Dexter's future needs.
We are also currently on a waiting list for wheelchair services as he is getting too big for a pushchair and he absolutely hates sitting in it - I hoping a wheelchair will make him feel 'grown up' and being independently able to get in and out of the chair. The week before Christmas, Dexter will be getting measured for night splints which will mark another point in how his life will be from now on. He's goes to hospital every six months and we see the consultant at East Surrey every six months too alongside physiotherapy every two months. Life can sometimes be a blur of appointments.
When Dexter turns four in March, the consultant wants to put him on to steroids, but we are hoping there may still be spaces on the clinical trial as these are our best chance.
Through all of this we are remaining positive and hopeful for the future. I am currently pregnant with my second child. After Dexter's diagnosis I was scared to have another child as I knew I couldn't go through it again if he/she was born with Duchenne so we underwent genetic testing to make sure this wouldn't be the case and thankfully now I am starting to enjoy the pregnancy, although I still get nervous with each scan. In particular I am looking forward to Dexter meeting his little sister. Dexter absolutely loves babies and interacting with younger children. You see him challenging himself a lot more when he's with other children and interacting way more than he is when with adults. He has such a caring personality and wants to help younger children and babies when they are upset so I know he'll make such a brilliant older brother.
We came across the charity Harrison's Fund after being put in contact with some of its supporters through our council case worker. Having that support form other parents and knowing you are not alone in this fight has been amazing. I was hoping to undertake some fundraising for them earlier this year but my pregnancy has put a hold on that but as soon as I can I'll be back out there, showing my support and doing everything I can to raise awareness and money so that boys like my Dexter and the thousands of others like him have a chance for a future.
Jen Squires Jamison. 35. Warlingham. Surrey
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