Monthly Archives: February 2016

Making Today Count

‘Happy are those who dream dreams and are willing to pay the price to make them come true’

 I first read these words yesterday. They were written across the top of the certificate I received for completing my first ever completely terrifying, amazingly exciting tandem skydive at the Wild Geese Flight Centre. The event, the occasion and the significance of the date were all part of my ‘paying the price’ to make my dream come true. You see I have a dream, one that I will never let go of, the one thing that takes precedence over everything else in my life. It’s a dream that has pushed me to do things so far outside the comfort zone of the shy girl that I am, that I can no longer see the zone, a dream that is so close to being real but so far that it may not happen in time. It will be no surprise to those who know me and our story, that my dream is to end Duchenne Muscular Dystrophy (DMD), to bring to an end the trail of destruction the disease has wreaked through 3 generations of my family, the condition that made my grandmother bury 3 sons, 2 of them only 10 days apart, the condition that took my brother from me, and that threatens the lives of my son Luke and my cousin Brian Og.

I completed my Skydive as part of the Make Today Count team for Muscular Dystrophy UK (MDUK). The project aims to inspire people to make use of the extra day in the Leap Year by taking to the skies over one weekend to raise funds for the Duchenne Research Breakthrough Fund, a fund that I believe will pave the way for my dream to come true.

Ever since I was a young child I was fascinated by the notion of the leap year and was always excited to hear of someone who had their birthday on that day, but I never would have imagined just how significant that date would be in my life. At 5.07am on the cold morning of February 29th 1996, my only brother, my best friend, my side kick, took his last breath. He had lived with DMD for 16 years, 1 month and 9 days. He gave it all he had but, just as it always does, Duchenne won. Mark’s passing left a sadness in my life that will only be known by others who have lost a sibling, especially one so young. There have been so many occasions in my life where I have missed him beyond measure, especially following the birth of my children and the diagnosis of my son Luke with the same condition. But as Mark’s 20th anniversary approached I was adamant that, while there may be tears shed for him, this anniversary would be a celebration of his life. It would be an opportunity to do something crazy, something he would find ludicrously hilarious. For this anniversary I wanted to remember him laughing and not the events leading up to his passing. So together with 10 friends, I signed up to Make Today Count and braced myself for the adventure.

I will admit I was petrified. The only time I ever remember being so scared was when I was on my way to the hospital to see Mark before he died. As the plane door opened at over 10,000 feet I think my heart might have leapt straight out of my chest if it wasn’t for all the parachute equipment. But taking that leap from the plane was absolutely exhilarating. I was so overcome with emotion that I wanted to cry but all I could do was laugh and admire the beauty of the countryside below me as I said ‘well our boy, I did it’ and I could just imagine him cheering me. The event and Mark’s anniversary, which coincidentally coincides with World Rare Disease Day 2016, is an opportunity for me to remember my brother and strengthen my resolve to make my dream come true.

The price of my dream is a hefty one. It’s one that will push me to my limits, will take precious time, it will pull at my already broken heartstrings, it will take tears and setbacks and many years of fighting but can you imagine how happy I will be when my dream comes true? And it will, it has to!

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mARKS ANNIVERSARY 20002

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”Duchenne, My boy will never be yours”!

Duchenne you have taken so much from me, my only brother, the opportunity for me to know my uncles and the opportunity for my boys to know theirs, maybe some of my hopes for the future but I assure you Duchenne my boy will never be yours.

You may waste his little muscles so that even getting off the floor is a chore, but I will have taught him the value of perseverance so that he will try and try and when he is no longer able he will not question his own resolve and you will not win.

You may stop him walking, running, swimming, all the things he loves, but I will have taught him the art of adaptability so that you Dear Duchenne will not win.

You may stop his little arms from hugging me but you cannot stop me from wrapping his arms around my neck and squeezing him so he knows that even if he can’t hug me I will never stop hugging him and he will always know that he is loved, and you will not win

You may take his ability to be active in a way that only teenage boys can, but I will have taught him values that he will seek in others who will become his friends so that he will always have a friend who will stay with him, he will have friends who adapt their plans to include him, he will never be alone and you will not win.

You may fill his life with the monotony of hospital and therapy appointments but I will fill the rest of his time with enjoyment and love so that these things you put him through will just be minor blips in an otherwise perfectly happy life and you will not win.

You may take his ability to move freely, but I will have taught him determination in spite of his challenges and together we will find ways for him to maintain his independence so that you will not win.

You may make it difficult for him to breathe and quash his tiny lungs but I will manage his care with such love that such things will not impact immensely on his quality of life and you will not win.

And even when you take his last breath and stop his heart from beating you still will not win. You see, he and I are connected by the soul and you can never touch his soul. It is pure and perfect and beautiful. And while I may despise you for the hurt that you have caused, I will teach my son to love you because you are a part of him and he is indeed pure and perfect and beautiful.

Duchenne, I know that you will be relentless in your fight and you will one day take him from me, but just know that I will fill his life with love, his heart with determination and his soul with such compassion that even though you may slowly take his body, my boy will never be yours.

Sometimes