Witnessing her brother, Ben, living with Duchenne muscular dystrophy gave Laura Hodgson the inspiration to complete her first triathlon at this year’s Copenhagen Ironman. Going the distance by running a marathon, cycling 180km and completing a 3,800m open water swim in under 15 hours. Following the challenge Laura shares her experience.
Completing my first Ironman challenge: "My brother was my main motivation. When the going got tough, I thought of Ben.”
Inspiration behind the challenge
My younger brother, Ben, 26, has Duchenne muscular dystrophy. I’m also a carrier of the condition, so the charity means a lot to us as a family.
Ben’s been living with the condition for a long time. I’ve witnessed his struggles and his deterioration. He can’t lift a pint glass off the table and even struggles with a half pint glass now.
It’s made me determined to do something positive. By increasing awareness and raising funds helps to get one step closer to finding a cure and helps provide support for individuals to live longer, more fulfilling lives. Things probably aren’t going to change for my brother but it’s for future generations.
Our younger years
Receiving the news of Ben’s diagnosis was shocking. It soon became our family’s normal, as you adapt. As much as I love my brother, when he was younger, he could be challenging. Maybe because his diagnosis was difficult for him to process.
Looking back Ben walked on his tip toes and always had massive calves. He couldn’t walk far, so we’d often take a pushchair if he needed to rest.
Ben hasn’t walked since he was 10, after he broke his ankle, he was just too scared. Had that not happened he may have walked for a bit longer. He started using a manual wheelchair and has used an electric wheelchair for over a decade.
Accessibility and adaptations
Having a sibling with a condition completely changes your views on people’s behaviour in the wider population. It’s amazing how many people have no considerations for others with disabilities. We don’t live in an accessible world. It’s not fair on disabled people.
We’ll be walking with my brother, and someone has parked over a dropped kerb. Or a pub only working lift has been out of action for years or another local pub has a step, so people lift Ben and his wheelchair to gain access. Luckily, he’s got supportive friends around him that help and don’t treat him any differently.
Me, my brother and my sister are all foodies. We find different places to eat, providing the restaurants are accessible. We research beforehand, as often they’ll state they have a disabled toilet, but when you arrive it may not fit Ben’s wheelchair. It’s frustrating that the accessibility isn’t to the standard that Ben needs.
The diagnosis doesn’t just affect the individual it affects the whole family. It changes the family dynamics of your entire house. Adaptations had to be made for Ben by moving his bedroom downstairs into the dining room to make him more comfortable.
Even our holidays are completely different to ensure that the location is accessible. To the point that Ben doesn’t like going away now. He likes his home comforts, as he knows how everything works.
Caring role
My mum is amazing as Ben’s full-time primary carer and is excellent at balancing her two roles as a parent vs carer.
Even though Ben is an adult, she can’t just go away for the weekend and leave him. As me and my sister have grown up and become more independent. Ben’s becoming less independent, as he’s got older due to his condition. My mum’s life isn’t the same as what it might have been.
Living with a life-limiting condition can be a lot to deal with and Ben’s struggled with his mental health at times. We try our best to support him through difficult times.
Genetic testing
Following my testing I wasn’t sure how I felt after being told I was a carrier, but I wasn’t surprised. It cemented that I’m not sure I want children.
It’s a hard enough world to live in without adding disabilities into the mix of things. I personally wouldn’t want to bring a child up knowing they may have the condition my brother has.
For my mum, she wouldn’t necessarily have had that choice, as genetic testing wouldn’t have been an option. The advances of testing has grown even in my lifetime. To find out you’re a carrier and to know what the process looks like if you were to have a baby is completely different.
As a carrier your heart can be affected, so I receive heart scans every few years. I’m fortunate in the Army to have access to medical care and I’m under the care of a cardiologist. It makes life a lot easier, especially if anything was to flag up. Thankfully, it hasn’t yet.
The challenge
Completing my first full-distance triathlon has been my biggest challenge since joining the Army 12 years ago, as an electronics technician in the Royal Electrical Mechanical Engineers (REME).
It’s been hard juggling training for both work and the event since last September. Some weeks I’ve clocked up almost 17 hours of training. It would’ve been easier to give up at times. Making it to the start line was an accomplishment.
I’m proud to have completed my longest open water swim, cycled my longest distance of 180km and run my first ever marathon for such a worthy cause.
When the going got tough, I thought of Ben. He was 100 percent my main motivation. He’s proud of me and donated to my JustGiving page. Having my sister there cheering me on was great.
I’m not the one with Duchenne muscular dystrophy, so I wanted a hard challenge to make people donate. Also, one day I may not be able too, so I’m pushing myself whilst I can.
Support Laura’s fundraising
By supporting Laura’s mission, you’ll help fund research and provide support for people living with a muscle wasting condition.
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