Jenson
“Part of the process is grieving for the child that you haven’t got, for the life they won’t have. I had plans, especially as Jenson is my first little boy.”
Craig’s son Jenson is 5 and has been diagnosed with the muscle wasting condition Duchenne Muscular Dystrophy.
"Jenson was diagnosed at 3 years old. Because I have older children I just knew there was something not quite right when he started walking. At first the doctors thought it was just flat feet and they said they would monitor it until he was 3. He was walking quite early but when he would come to any kind of step, he would look for something to hold on to. Whereas most kids jump up from the floor, Jenson was leaning on his hands. There were a few things that I was quite concerned about.
We were really concerned and kept taking him back to the doctors, at least once every few weeks. It got to a point where we asked to be referred. They carried out some blood tests and when the results came back they asked Jenson’s mum, Hannah, to call into the surgery. I was actually in work so she went with her mum, and called me upset to say that he’s going to end up in a wheelchair.
I had to wait until our next appointment to speak to the doctor but in that time I carried out my own research. Initially we were only given an information booklet. the chance to talk to the doctor at the next meeting but I had to do my own research. We were only given an information booklet.
There is currently no treatment available but there is a lot of research happening. It would mean everything to me if they found a treatment. I’m working day and night now. I’m tired and constantly on my phone. I know it’s a long shot but all we have is hope. I’ve got 2 older kids and they’re getting a bit left out to be fair because it’s taking up all my time.
One of the ways I am raising funds is through running. I never used to be a runner but am now doing half marathons every month. The running really helps me though and it’s been the best medicine by far.
I am constantly researching and looking for potential treatments, home and abroad, but Muscular Dystrophy UK are just brilliant and do keep us informed if anything knew comes out.
In terms of disease progression, we try not to look into the future and take it day by day. With Duchenne, no child is the same. I find it hard because some may die in their 30s but their quality of life can be poor by then. The disease affects your legs and arms and you can’t keep your eye lids open, chew your food or go to the toilet by yourself. It’s not even bearable to think about. We both find it incredibly hard to cope with. Hannah’s constantly getting upset. She sees a wheelchair and she’s in tears, but I just block it out. We don’t know what’s around the corner, we’ll just cross that bridge when we come to it.
Part of the process is grieving for the child that you haven’t got, for the life they won’t have. I had plans, especially as Jenson is my first little boy. I was looking forward to the normal things in life that people take for granted, like watching him play football and taking him to boxing lessons but all of that just went, and I find that really hard. I don’t think anyone would understand that until they are in that position, even the specialists in the hospitals. It’s really tough.
If I could speak directly to the people researching treatments for Duchenne I would ask them to please just do your best, that’s all you can do. I’d give my own life, it’s that precious.
Awareness is very important to make people understand. Having to explain what Duchenne is to everyone is tiring and quite hard. You’ve got to tell it over and over to every person you meet. People also do not always realise that their donations are what funds the research into rare diseases like Duchenne and without it there will be no possible treatments.”
Duchenne muscular dystrophy is a muscle-wasting condition caused by the lack of a protein called dystrophin. It usually affects only boys. About 100 boys with Duchenne muscular dystrophy are born in the UK each year and there are about 2,500 boys and young men known to be living with the condition in the UK at any one time.
Duchenne muscular dystrophy is a serious condition that causes progressive muscle weakness. Owing to the lack of the dystrophin protein, muscle fibres break down and are replaced by fibrous and or fatty tissue causing the muscle to weaken gradually. No cure has yet been discovered, but there is promising research into the condition.
For more information or support please visit www.duchenneuk.org.
If you wish to discuss this project or reproduce any images or story, please contact ceri@samebutdifferentcic.org.uk. The photographer on this project is Ceridwen Hughes (www.ceridwenhughes.com)