Agadem's story.

I’m 57, was born in Stoke-on-Trent, Staffordshire and have lived here all my life. Hard work and sport have been extremely large parts of my life, having been employed for 29 years with BT and self-employed for 12 years. In my spare time I used to love playing football, golf and squash. Although I can’t participate in those sports anymore, I still manage to work out on rowing machines.

As a kid, after my paper round it was always off to the park with my mates to play football, throwing our jumpers down to act as goal posts. I was always the last out, usually being thrown out by the Parkie ringing his bell and closing the gates behind me. During my teens my addiction to football continued and I played in teams with the likes of Robbie Earle who went on to play for Port Vale before moving to Wimbledon and being part of the ‘Crazy Gang’!!!.

In addition to football, I also relished playing squash (probably my favourite and best sport) and golf into my 20’s and 30’s. Being a Staffs 2^nd team County squash player was probably my best sporting achievement whilst also being a very keen golfer playing off 13.

During the mid 90’s (when I was in my early 30’s) I noticed the muscles in my legs getting weaker and my standard in all sports began to deteriorate. Very long story short but after my initial visit to the doctors, my blood test levels for Creatine Kinase which should be in the range of 200 – 395 returned at 14,000. I was informed that very serious muscle wasting was taking place but despite endless tests and biopsies, I did not get the diagnosis of Limb Girdle Muscular Dystrophy 2L (LGMD2L) until 2011. The gene which causes the disease, Anactomin 5 was only identified in 2010 and I suspect it was my last muscle biopsy which helped to identify the gene.

Although I’ve always worked, I had to finish playing football and squash around the turn of the century with my last game of golf being in 2005. My walking and balance are now poor and will continue to deteriorate until I become wheelchair bound. Orthotic knee braces are an absolute godsend to help minimise my falls and I also have a mobility scooter which allows me to enjoy my visits to numerous National Trust parks.

Whilst all versions of Muscular Dystrophy (MD) are awful diseases, if you’re going to have one, LGMD2L is probably one of the best to have. Strains such as Deuchene MD and Becker MD are far worse than mine and are absolutely evil. Research funding is very poor and I’m passionate about trying to help. After my diagnosis in 2011, I trained for 18 months and rowed the distance of the English Channel. Covering 21 miles (33.7km) on a gym rowing machine in 2 hours 55 minutes I raised £2,200 from my friends and family in Stoke. Although I could not row that distance now, I still religiously row 8km (5 miles) every day to try and look after my upper body strength and cardiovascular system.

Finally, and without going into any detail. I would like to say a MASSIVE thanks to Zengas, Porschefund and all the great people on the London South East bulletin board for Savannah Energy, who contribute to an amazing anonymous chat forum.

Thank you for all your AMAZING donations which are going to extremely good causes. One day I hope that all Muscular Dystrophies will be eradicated from the human race but that will not happen without the very contentious issue of gene tampering.

May I wish you all the best and I hope all your dreams come true x