ABOUT
DMD
&
HELP 4 HARRY
Our DMD story..........
DUCHENNE
MUSCULAR
DYSTROPHY
DMD is a genetic disease that causes muscle weakness and wasting. It is the most common and severe form of muscular dystrophy.
It is caused by a fault, known as a mutation, on the dystrophin gene. Dystrophin is a protein that protects muscles; without it, muscles are easily damaged, and their strength and function is weakened. It eventually affects all the muscles in the body, including the heart and lungs.
DMD almost always affects boys.
There is currently no cure for Duchenne, but there is hope.
OUR STORY...
This is the tough bit.............
Our Harry
Harry celebrated his 5th birthday in August 2013 and like many 5 year olds enjoyed his party running round with his friends. He's a very cheeky chap who would try and get away with anything using his smile. He was into everthing playing football after school, swiming and taking great delight in winding up his older brother Jack.
It was often pointed out that Harry's calves and legs were bigger than most children his age so family and friends would joke that Harry will soon find his way to the rugby pitch. Unfortunately Harry couldn't quite keep up with his friends when running so after various GP appointments Harry had a blood test.
When everything changed
On the 1st June 2013 we were told the results and our world fell apart. We were told it was serious and more tests were needed but it was suspected Harry has Muscular Dystrophy. Two months later following a muscle byopsy it was confirmed Harry has Duchenne Muscular Dystrophy. We were told by his 10th birthday it is likely he would be in a wheel chair and his upper body will then begin to shut down due to this rare and painful condition. As a muscular degenerative disease eventually his heart and lungs will fail, almost certainly before he is 30. The most difficult part - there is no cure, it will happen and it is 100% fatal.
Enjoying the 'now'
Whilst it is impossible to forget what the future holds for Harry we never forget how Harry is now. Concentrating too much on the years to come will just mean we will all miss out on fun and laughter today and tomorrow. If you spend any time with Harry he will make you smile, he's the cheeky chap and sooner or later he'll be running rings round you... :)
THE FUTURE..
Harry is amazing......he is determined and with some incredible help and support his achievements are phenomenal. Harry is fully aware of his condition and what the future might hold but the honest truth is timelines are changing and he continues to work hard to make the most of everything.
Harry only started using his wheelchair fulltime at the age of 14 following a break to his femur but even then he switched from an electric chair to a manual active user chair, took up boxing, gym sessions and rowing as well as help start a new Powerchair Football club.
Regular clinics, heart and lung check ups and assessments at Great Ormond Street Hospital have become the norm, each one Harry takes in his stride.
Many boys with Duchenne are living longer, how long....? You will see numbers ranging from 25 to 50, with 30 probably being the most common. But the truth is that nobody knows the “right” number.
For now, every day is important and as a family we continue to live life to the full as much as we can.
