Myself and my older brother both have a condition called Limb Girdle Muscular Dystrophy. As you may well imagine I love my brother to bits but I don’t like how the condition is affecting him, he is getting weaker and it’s becoming quite evident as he relies on his power chair to get around. There is an expectation that I will deteriorate too, that this is how my life will be and what I have to look forward to.
We’re not alone; over 70,000 people in the UK have a form of Muscular Dystrophy, including families I know well. These conditions are devastating and I’m not prepared to just sit and watch people that I love deteriorate. I’m here to help the best I can.
On the 22nd March 2015 there was a lifeline appeal on BBC One hosted by Sue Barker, MBE. Sue Barker is the charity's President and a fantastic person whom I was very lucky to meet. During the appeal Sue told the stories of seven year old Abbi Bennet and Jonathan Gilmour, both of whom are living with different types of Muscular Dystrophy.
“Every step you take is powered by your muscles, but there is a condition that can turn even the tiniest movement into a struggle. It’s called Muscular Dystrophy and it causes the muscles to get weaker and weaker over time. For many that includes the muscles that allow the heart to beat and the lungs to breathe.” – Sue Barker MBE.
The stories were very emotional and although about very different types of the condition, they rang true with me and felt especially close to home: those loved ones talking about family and also Jonathan addressing what I think is important, inspiring you to do your best to help yourself and also look out for the next generation. For me this is an opportunity to help those that, in the future, may be less fortunate than you.
I honestly feel that we have one chance whilst we're here on earth, that it’s very short and everyone should do their best to make an impression, leave a footprint which says “I was here - and it was bloody fantastic!”. I’ve tried to do that, to help as many people as possible just by telling others about Muscular Dystrophy, sharing with them the story of my diagnosis and how my life has changed for not just myself, but my family and those around me too. It’s not all bad and some of that is because I started to write. The internet is a platform that I never thought I’d be on, but I am and I love it here.
I am a dad and have three wonderful girls that look up to me. I know I’m supposed to point them in the right direction and give them a thirst for life, make sure they know that if it throws you a curve ball, hit it back regardless. I want them to grow up believing that every hurdle put in front of you, you jump it and set yourself up for the next, however high.
I’m also supported and have been for years by my wife, Michelle. Michelle has such a willingness to help others it is unreal. A very selfless and thoughtful person who I couldn’t do without.
I’m not scared of pain. I don’t really fear much if I’m honest. The one thing that does scare me though, in fact it petrifies me, is not trying or making any effort, and I can imagine that would come with regret too which is another thing I'd hate.
There’s too much focus on what people don’t have and what they wish they could do and the same could be said of me, but sometimes by focusing that way you forget what you do have and forget what you can do.
Right now I can still walk and I get out and about and it’s invigorating and refreshing. I may not go far and I may not go for a long time but I do get out on my own legs. I know this won’t last for long and as I said earlier, I’m not scared of much, not even losing the ability to walk. I need to be able to look my girls in the eyes one day and say “Daddy has done all he can, I’ve tried and I’ve had a great time along the way”.
So now you know that I’m ready for life’s challenges and my attitude is a very upbeat one, I want to tell you our plan and how we’ll need your help.
On Sunday, August 30th I have organised and plan to take part in a relay. This will be a very special relay over the distance of a marathon. Over 26 miles, over 30 participants, raising huge awareness and vital funds for world class research into muscular dystrophy.
The day will also consist of a festival of music and entertainment which is free to all. The organisation is coming on very nicely albeit lots of hard work but I’m sure it’ll be worth it.
We have to do this, we have to help people like my brother, Abbi and her family and we need to make sure that we are fulfilling Jonathan’s request to look out for the next generation. It’s something so very little… 5,280 feet, 1,760 yards, about 1,609 metres or indeed one mile. Could you take on one of the 26 miles for us? Could you help me to help others? Help with vital donations?
That’s the question I’m asking of anyone reading this. That adventure that I spoke about at the start? That starts here and now.