A FAMILY charity set up to support people with limb girdle muscular dystrophy has linked up with a national organisation – and has funded information packs for people who are newly diagnosed.
The B Baggins Foundation, set up by Roberttown student Ben Booth and his family after Ben was diagnosed with the condition, has linked up with national charity Muscular Dystrophy Campaign, and has already started work to help others with the incurable muscle wasting disease.
The foundation takes its name from Ben’s nickname, Benbo Baggins.
Ben, 20, who is studying for a degree in electrical engineering 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.”
Ben’s brother Sam, who is involved with the family foundation, said: “I can’t really put into words what an inspiration Ben is to me. 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.”
Ben’s family and friends have already completed several fundraising activities including the Yorkshire Three Peaks challenge, snail racing and five-a-side football tournaments.
The foundation is organising a snow ball at the Lakeside Restaurant, Ponderosa, with a three course meal, auction, raffle and DJ. The event takes place on Friday November 23 at 7pm at the restaurant in Smithies Lane, Heckmondwike. Tickets are from £11-£24. Search B Baggins on Facebook for more.