So, beginning to wonder exactly what it is I am embarking on in 2013….. I’ll start from the very beginning.
On 12th October 1992, my perfect, beautiful little brother was born. As a 9 year old girl I couldn’t be happier, or prouder, to be a big sister.
However, one day, when my angel brother was only three years old, we received the devastating news of a Duchenne Muscular Dystrophy diagnosis. I hadn’t a clue what this was, had never heard of it before. All I knew was what my mum told me. He would be like superman (Christopher Reeve), unable to move, in a wheelchair, but perfectly intelligent. And the worst news, he was suffering so bad he would be unlikely to make it past 16 years of age.
I won’t lie, the news was awfully hard to swallow. I mean, I was meant to protect my little brother. Good job I did of that one huh??!
DMD is an inherited x-linked chromosomal condition, usually passed from a carrier mother to her son. Unusually, my mum wasn’t a carrier, and it was ‘just one of those things’.
In the years that passed we saw a gradually, but brutal decline in his health. First he couldn’t walk, then we had to start feeding him and scratching his itches (which he took high advantage of!). Not only did he decline in ways in which you could see, he also declined on the inside. His lungs started to fail and he needed ventilation at night. He suffered terrible pneumonia in his teenage years. His heart also slowly deteriorated and he was on countless medications. He developed curvature of the spine and was in terrible pain every day.
But despite all of this he thrived. He enjoyed life to its fullest and even achieved GCSE’s, and moving onto college. He loved to play wheelchair football and boccia.
From end of 2011 things took a massive turn for the worse. He feel into deep depression and gave up the will to live after fighting for so long. From November 2011 he was bed bound and he passed into the next realm on Easter Sunday, 8th April, 2012. He died with a huge amount of dignity and respect from others, even planning his own funeral, making a will, and donating all his leftover money to the Muscular Dystrophy Campaign.
My brother has been a huge inspiration to myself and many others over the years. We all miss him terribly, and the pain of his death is still terribly raw. But it is now time to convert this pain into positive energy.
So 2013 brings a new challenge. The challenge of 5 races and countless miles in training. And dear old husband is joining me too!
I know I have run two marathons before. But this time I am running I memory of Graham, and not in hope of finding a cure for him. But there is still time for many others. Many other boys like my brother who may not yet know their fate without a cure.
And on top of the London Marathon I. April I will be running, The Kingston Breakfast Run, The British 10k, The Great North Run, and The Great South Run. Combined with an entire year of training.
This blog is to mark my achievements over the year as well as any lows I may face. I promise to be entirely honest throughout, emotions full flow!
Oh, and not forgetting I need to be a mum and work full time as a midwife !!!!
Please follow my efforts over the coming year and share with those you feel would be interested. I will soon be getting my fundraising page together, where you can donate to my effort in the fight against muscle disease. Matt and I need to raise a staggering £3000 between us so please donate as much as you feel you can 🙂 those of you who I work with will also be the lucky participants of many bake sales!
I look forward sharing this experience with you.