There are approximately 639 muscles in the human body. Muscles are one of those things that most of us take completely for granted. In the past I certainly have. The reality is it is impossible for us to do anything without muscles. Absolutely everything we do involves some form of muscular activity.
One of my friends at work, Tony, recently found out both his sons have Muscular Distrophy. Muscular dystrophy (MD) is a genetic condition that over time gradually causes the muscles to weaken. This leads to an increasing level of disability.
There are several different types of MD, with different symptoms and patterns of progression. The progression of MD varies, not only between the different types, but within them as well. Some genetic mutations can cause a milder version of the condition, and some will be more severe. Children with Duchene MD may be in a wheelchair by the age of 10, the condition can be life-threatening.
Currently medical treatment is limited to treating the associated physical & cardiac conditions, but research is ongoing.
To help support Tony & his family I decided to embark upon on a series of challenges to help raise awareness of Muscular Dystrophy & hopefully to raise some sponsorship monies along the way. My accounts of these challenges can be found by clicking on the link below. With the goodwill & help of a lot of people I have created ROAM 639, a new waymarked trail in the Devil's Punchbowl, Hindhead.
If you are still unsure how the condition affects people please read on for some insight into the impact of Muscular Dystrophy on the lives of Alfie & Arthur ...
Alfie & Arthur have both been diagnosed with a particular strain of MD known as nonsense/ point mutation. There are currently only about 50 people living in the UK with this form of muscular dystrophy. Neither Alfie or Arthur are expected to live beyond their early 20's. This type of mutation is carried by the mother, Jenny, & has health implications ofr her too. As a family the diagnoses have been devastating.
Alfie has already started to show signs of struggling with his legs as he is getting bigger and older he complains of his legs hurting him even after walking only a short distance. He requires physio every night. He also requires braces when he go to bed. These fully immobilize him.
Alfie has recently been diagnised with attention deficit hyperactivity disorder (ADHD). He relys on routine and will become aggressive when it changes. We have monthly meetings on his progress and work with range of professionals to meet his specific needs. He is currently in his first year at a mainstream school & is doing really well. He has been 'statemented' in the hope that he will continue to get the help he needs. He currently has a one to one helper which is great for a child with ADHD. Communicating with Alfie can be very difficult, he has had extensive speech therapy.