JENSON
Craig’s son Jenson 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”.
“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 in work at the time so she went with her mum. Afterward, she called me and was really upset saying that he’s going to end up in a wheelchair.”
Jenson feeding chickens at his photoshoot in 2018 - all photographs by Ceridwen Hughes
“I had to wait until our next appointment to speak to the doctor but in that time I carried out my own research. Initially all we were given was a single information booklet and the chance to talk to the doctor at the next meeting.”
“At the moment, there is no treatment available but there is a lot of research happening. 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.”
“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.”
“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”.
Jenson smiling into camera on his 2018 photoshoot
“In terms of disease progression, we try not to look into the future, we take it take it day by day. With Duchenne, no child is the same and I find it hard because some may die in their 30’s 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”.
Jenson smiles into camera during his 2023 photoshoot
“Awareness is really important to help people understand. Having to explain what Duchenne is to everyone gets really tiring and difficult as you’ve got to tell it over and over to every person you meet. People also don’t realise that their donations are what funds the research into rare diseases like Duchenne and without it there will be no possible treatments.”
With grateful support from:-
FIND OUT MORE
DUCHENNE MUSCULAR DYSTROPHY
Duchenne Muscular Dystrophy (DMD) is a genetic disease that causes muscle weakness and wasting. Children born with DMD have a fault, known as a mutation, on their dystrophin gene. Genes are smaller sections of your bodies DNA - they are the instructions that make our bodies work. For people with DMD, the fault on the gene means that they cannot produce dystrophin, which is a protein that protects muscles. Without dystrophin, muscles get damaged more easily and so muscle strength and function is weakened.
DMD almost always affect boys, and they tend to be diagnosed before the age of 5. There are around 2,500 patients in the UK and an estimated 300,000 worldwide.
To find out more about DMD, click here.
Source: https://www.duchenneuk.org/Pages/FAQs/Category/what-is-duchenne
DUCHENNE UK
Duchenne UK describe themselves as a ‘lean, ambitious and highly focused charity with a clear vision: to fund and accelerate treatments and a cure for Duchenne Muscular Dystrophy (DMD), and to do so in a decade’. As well as fundraising, Duchenne UK also have thorough and up-to-date resources for families with DMD including support and advice for those who have been newly diagnosed.
To learn more about Duchenne UK, click here.
Source: https://www.duchenneuk.org
You can read about some of the other people taking part in the Rare Project by clicking here.
Don't forget to visit and 'Like' our Facebook page too so we can keep you up to date with our new rare stories by clicking here.