On the 1st July we're taking part in Pedal, Paddle, Peak, in support of Muscular Dystrophy UK. It’s a charity particularly close to our hearts as my brother Nathan, was diagnosed 20 years ago with Duchenne muscular dystrophy.

In the early stages, boys with DMD show signs of muscle weakness, such as difficulties running, jumping, climbing stairs and getting up from the floor. They can show a Gower’s manoeuvre (needing to support themselves with hands on thighs as they get up from the floor), and a waddling gait (walking on their toes with arched lower back). This is something I remember vividly, watching Nath grow up he would often be compared to a rugby player with his big calves he’d developed from running about the house on his tip toes.

With the progression of the muscle weakness, we slowly watched him not be able to walk as far or as fast as other children, and he’d grab hold of anything he could for support, I’d always feel over protective of Nath playing around other kids as they wouldn’t be aware he’d easily fall over. The early degenerative nature of muscular dystrophy was made very clear when it came to the stairs at home, one day it seemed as though he’d fly up them with just one hand on the rail but maybe bringing the second foot up to join the first rather than going foot over foot, little time would pass and he would be using both hands to help him scramble up and another year or so would pass again and one of us would maybe carry him up and he’d slide down, until it got to the point a lift was installed at home.

Steroids have significantly changed the natural course of Duchenne muscular dystrophy and helped Nath to maintain the muscle strength and function until he was a teenager but ultimately all this did was delay him needing a wheelchair. Most boys will become wheelchair bound between 8 to 11 years (sometimes a little earlier or later). 

At first, Nath would use the wheelchair fleetingly (and reluctantly) as he was so used to being able to get around on his own, so this would be used mainly for long distances or if we were out for the day & be there for when he became tired. Overtime, he became more dependent on this and the falls he had would get worse and worse as his muscles grew weaker.

At this stage, Nath’s wheelchair use is full time and he experiences difficulties raising his arms above shoulder level, something all boys with Duchenne muscular dystrophy will go though. He sleeps with a CPAP machine due to the demand on his lungs, has regular check ups on his heart and weekly hydrotherapy sessions. Nath’s unwavering strength & sense of humour are something we’ve always cherished as a family and something I’ve taken a great deal from over the years.

With further progression of muscle weakness, the maintenance of good posture is increasingly difficult and complications are more likely. The condition is severe enough to shorten life-expectancy but today, with high standards of medical care, most young men with Duchenne muscular dystrophy reach adulthood.

Duchenne muscular dystrophy is a genetic condition – it is caused by a mutation in the genetic code (DNA). MDUK is the charity for the 110,000 children and adults living with muscle-wasting conditions in the UK. There's currently no cure, and it many cases, it limits lives. Vital support is needed now as MDUK fund world-class research into treatments and cures as well as providing vital information, advice, resources and support for individuals and families living with these conditions.All donations, big or small, are greatly appreciated.

Thank you!