Hi, I’m Claire, I’m married to Aidan and we have the privilege of being parents to two gorgeous, squidgy little boys: Luke who is 4 and Coen who is 1. Wow, no one told us how much energy you needed for 2 young children. We live in Northern Ireland in a little bungalow built for 2 but sleeps 4.
For my day job I help people who want to start their own business. I love it I meet new people every day and get to hear some weird and wonderful business ideas. But my real passion in life is raising my boys and more recently, whipping some Duchenne butt!
You see, my beautiful, blue eyed, cheeky monkey, super clever first born son was diagnosed with Duchenne Muscular Dystrophy on the 25th May 2012. Not only that, but I also lost my only brother to Duchenne when he was just 16 years old, my grandmother lost 3 of her 4 boys to Duchenne, my cousin had Duchenne and another cousin’s beautiful little boy, Brian Og is also living with Duchenne.
Luke’s diagnosis, took every part of me and crushed it. It meant we will have to watch as Luke gets weaker and weaker until his legs will no longer hold him, until his arms will no longer hug us and until his lungs fail him and his heart stops beating. And all this will happen before he reaches his 20th birthday (Northern Ireland life expectancy for Duchenne is 19 years old).
To add salt to the wounds of diagnosis, I have also learned that Northern Ireland has the poorest care standards for Duchenne in the UK meaning that children here have a lower quality of life and life expectancy compared to children elsewhere in the UK.
Since I’m normally a quiet, shy and reserved, kicking Duchenne Butt has forced me well out of my comfort zone. In August 2012, following Luke’s diagnosis in May, I set up Leap for Luke, originally a fundraising group with the aim of raising money locally for research into Duchenne. I had envisaged a few fundraisers and some local awareness but Leap for Luke has gone from strength to strength. The awareness generated has been fantastic and the support for Leap for Luke in our community has been nothing short of amazing. Our supporters not only fundraise for us and build awareness of Duchenne but they also give us the strength we need to keep fighting. Since the beginning of the Leap for Luke journey I have been involved with various public speaking activities to raise awareness of Duchenne both among the general public and politicians, with numerous fundraisers both big and small, with campaigning for better care services in Northern Ireland and in numerous press initiatives to raise awareness of Duchenne. It’s been an amazing journey, albeit an intensely personal and emotional one.
I decided to write this blog not only to share our story and create awareness but also to help other families, especially those who have been recently diagnosed and, as is the custom in the UK , have been given a diagnosis of a terminal condition and simply left to it.
I look forward to sharing our journey, the good and the bad (but mostly the good and the hope that we have for a treatment for Duchenne) and hope it goes some way to helping others too.