BROTHERS Ben and Sam Booth have launched a foundation to help hundreds of people across the UK living with a rare muscle-wasting condition.
Ben, 20, who is studying electrical engineering at Huddersfield University, teamed up with older brother Sam after being diagnosed with limb girdle muscular dystrophy.
Ben told how the “tremendous support” he received from his family and friends after the diagnosis in March was vital in helping him come to terms with his condition.
Limb girdle muscular dystrophy causes muscles to weaken and waste over time leading to increasing disability, particularly affecting the shoulders and pelvis.
Some 1,000 people in the UK are affected.
Ben and Sam, 22, of Roberttown, set up the B. Baggins Foundation to ensure that all those diagnosed with the condition have the same access to vital support and specialist health information.
The foundation – which takes Ben’s nickname ‘Benbo Baggins’ – will also help to fund ground-breaking research into treatments.
Keen rugby player Ben first noticed symptoms several years ago as his gait when running began to change.
Over time, as climbing stairs became a struggle too, Ben’s mother Debbie, a community nurse, began to suspect her son might have a muscle-wasting condition.
It took 18 months – and a visit to a specialist centre in Newcastle – before the family finally had a diagnosis.
Ben’s family and friends have thrown themselves into fundraising.
A group of 30 supporters, including Ben’s former school friends from Mirfield Free Grammar School, took part in the Yorkshire Three Peaks challenge earlier this year, raising more than £3,000.
Other events as diverse as snail racing and five-a-side football tournaments have further boosted the foundation’s funds.
The B. Baggins Foundation is already working with national charity the Muscular Dystrophy Campaign to produce information and advice packs for those newly diagnosed with limb girdle and their families.
Ben, who is currently on a placement at chemical company BASF as he studies for his degree at Huddersfield University, said: “Limb girdle weakens muscles over time. I can walk now but have trouble with stairs and will eventually need to use a wheelchair.
“I feel very lucky that I have a very supportive family and wonderful friends so I haven’t felt alone for a moment in dealing with the condition.
“I worry that other people might not be so fortunate.
“Limb girdle is very rare and it can be a struggle to get a clear picture of it all – of what it means and what the treatments are.
“We want to make sure that people know they are not on their own and where to turn for help.”
Sam described his brother as an “inspiration” and said: “The way he has dealt with his condition makes me feel humbled to be his brother.
“It has been very tough for him. He has always been sporty and his absolute passion in life was rugby. He really excelled at it.
“However, as his muscles have weakened, he has become unable to run and has had to give up playing.
“Ben has absolutely no interest in helping himself through the foundation.
“All he wants is to help other people, especially those who don’t have the same network of family and friends for support.
“The B. Baggins Foundation is there for everyone with limb girdle but the name will always honour Ben.”
Gary Kernahan, head of volunteer fundraising at the Muscular Dystrophy Campaign, said the foundation was “making a real difference.”
For more information see www.bbaggins.org or visit B Baggins on Facebook.
