William Shakespeare once said, "By medicine life may be prolonged, yet death will seize the doctor too." I never really knew just how profound this statement was until one of my closest friends, Harry Watson died at the age of 14 two years ago.
There are a few people in the world who I would call a role model; Harry was one of them. He suffered from Emery-Dreifuss Muscular Dystrophy, a congenital genetic condition in which skeletal muscles progressively waste away, and changes in the electrical wiring of the heart (the cardiac conduction system) occur.
It also causes muscle contractures, which is a symptom that manifests as the tightening or shortening of certain muscles and tendons, restricting movement. As well as the restriction of movement due to these contractures, as the muscle is progressively wasting, the patient develops weakness, muscular atrophy, scoliosis (abnormal spinal curvature), an inability to walk (Harry was confined to his wheelchair at a young age), and other related symptoms.
Emery-Dreifuss Muscular Dystrophy weakens the lower legs first, and mainly affects the shoulders and upper arms, which meant that Harry could still operate his electric wheelchair using his hand to move the joystick. The condition also affects the heart, which is unusual for muscular dystrophy, which tends to affect solely skeletal muscles. The electrical wiring of the heart which controls the rate of the heartbeat is affected, so that the heart rate can be abnormally slow, although Harry was actually tachycardic (his heartbeats are abnormally quick) rather than bradycardic (when heartbeats are abnormally slow). Whether this is due to his pacemaker, I am not sure. The disease usually shortens life expectancy, but affected individuals can expect to reach middle age.
Harry, however, died at 14, after having achieved so much with his life. Harry was a huge fundraiser, even doing a 137ft abseil to raise money for his wheelchair. He was a selfless person and raised thousands of pounds for charities like Muscular Dystrophy Campaign, Dogs for the Disabled and Rainbows, the children's hospice in Loughborough. Amidst through all the suffering he went through, he achieved so much with his life, and always with a smile. Smiling amidst adversity.
Unfortunately, as the condition is a genetic disorder, there is no cure except for managing the symptoms and using a pacemaker to manage the heart rate, as well as gently exercise to tone muscles and improve strength.
The end of Harry's life was a shock for us all, even though we knew of his condition, but no one ever truly dies until the flame of remembrance blows out. And Harry will always live on in our memories. He was a true role model, and a damn good friend.
Rest in peace, Harry John Watson. You will always be remembered.
8 June 1995 - 14 November 2009
Harry's Fundraising News Stories:
Information about Muscular Dystrophy: