Today, 7th September 2015 is the 2nd World Duchenne Awareness Day. The date 7/9 chosen to reperesent the 79 exons on the Dystrophin gene where even the slightest change will cause Duchenne Muscular Dystropy.
Today I will be supporting Duchenne Awareness Day for all the ways in which Duchenne has impacted on my life. I will be supporting it so that I can play my part in saving the lives of this generation of children with Duchenne, while also remembering all the children and young adults who have already lost their lives to Duchenne.
All in all, 7 boys over 3 generations of my family have been diagnosed with Duchenne. It took the lives of 4 of them (all aged between 16-19), 1 died from other complications in infancy and 2 of them including my son Luke and my cousin Brian Og, continue to live in hope of a treatment that will allow them to be part of the first generation to survive this devastating condition that has wreaked havoc in our family. It has blown through like a hurricane with no mercy, leaving a path of destruction so that the landscape will never really be the same again.
I’ve told you before of my experiences following the diagnosis of my son and the daily struggle to live on that fine line between hope for a treatment and devastation at the terminal prognosis of the condition.Today I want to share with you my experiences of the loss caused by Duchenne. I want to tell you about my brother and how Duchenne snatched him from us almost in the blink of an eye.
I remember the morning of Wednesday 28th February 1996 like it was yesterday. I was 14 years old, no real life experience yet. All I knew was my family life – my mum, dad, big brother Mark and little sister Christine. Christine is 8 years younger than me, and Mark and I loved to spoil her. Mark was less than 2 years older than me and we were incredibly close. And though it seems like a cliché when talking about loved ones no longer with us, Mark really was my best friend. We did every thing together. Mark always sat on the arm chair next to the TV so my spot was on the floor by his feet so we could whisper to each other when mum and dad were watching TV. Sunday night was our night. Mark would get mum to put him into his bed early on a Sunday and I would bring in a chair and every Sunday we would watch ‘London’s Burning’ or whatever show was on at the time.
On that morning, as I stood at the top of the road waiting on my school bus, Mark’s minibus came up after collecting him as it always did, but that morning I actually paid attention and sniggered to myself because I realised that seeing Mark’s head bobbing away in the back between Tommy the driver and Teresa, his assistants heads, looked really funny.
I got to school that morning and I remember Mr Devlin’s form class were leading assembly for the junior school that day and they sang ‘If God had a Name’. I remember RE class that day and I remember Mrs McKenna was talking about a funeral and I turned to my friend and said ‘I’ve never been to a funera’l (I had no idea just how close I was to being at one). I remember coming home from school that day and Mark was already home and on his chair watching TV. He said he hadn’t felt well in school so he had got home early. I remember answering the phone to my cousin David who was more like a brother to Mark than a cousin. He had heard that Mark had got home from school early and was calling to see how he was. I remember going out with my friends that evening. On my way home that night I bought 2 Choc Pop ice lollies, one for me and one for Mark. But when I got in, Mark hadn’t been feeling well so he was in bed. I remember popping my head through his door and whispering ‘are you asleep?’ but all I got was a grunt back. I had no idea what was about to happen. I thought he was half sleeping so I left him alone. I put his ice lolly in the freezer, where it stayed for a very long time and it was never eaten. I remember that I fell asleep quickly that night, which never happened. I remember wakening suddenly at 2.10am to hear familiar voices coming from our living room. I remember hearing the footsteps of my aunts approaching my room as I pretended to be asleep. I remember them telling me I needed to get up and get dressed that Mark was unwell in hospital. I remember getting up and putting on my black jeans and Green Fruit of the Loom jumper. I looked in the mirror before I walked out of my room. I knew then what was happening, and I tried with every fibre of strength I had, not to cry. I remember going to collect another aunt before going to the hospital. I will never forget the walk up to the doors of South Tyrone hospital and I relive that night every time I walk through the front doors of that hospital. I remember walking into the room where Mark was lying on the bed. He had drifted into a coma around the time that I had woken up. I remember being told that he could hear us and to say hello to let him know I was there. I opened my mouth to speak but the words wouldn’t come out so instead I cried. I remember being told that Mark had asked for me as he was taken to hospital that night. I remember Father McKeever coming to the hospital in his slippers in the middle of the night to give Mark his last rights. I remember the moment he died at 5.07am on the 29th February. I remember my first question ‘what will we tell Christine?’. She was only 6 years old. I remember standing in the day room before we had to leave the hospital and watching Dungannon come to life from the tower of the hospital. I knew that life would never be the same again.
I remember the details of the next few days as clearly as the day leading up to his death. Duchenne had taken my only brother when he was just 16 years, one month and 9 days old. It took my best friend. It left my mum and dad to carry on without their son, it took the opportunity to grow up with a big brother away from my little sister. It left a huge gaping hole in all our lives that will never be filled. I can never hear the song ‘I watch the sunrise’ without being transported right back to the doors of the church behind Mark’s coffin as our family carried him inside. I think of my brother every day. I can still remember the smell of his room, the sound of his voice, the feel of his feet as he always asked me to feel if his feet were cold. I miss him like I have never missed anyone. I still tell him all that’s happening in my life and I wish that he could be here to meet my boys because I know that he would just adore them and they would adore him. But Duchenne has taken the only chance for a maternal uncle that my children had.
When Luke was diagnosed, I remember people saying to me ‘at least you know about the condition’. And yes, that is true… knowing about it in advance meant that I had always kept a thumb on the pulse of what was happening in research and meant that I was still supporting research into Duchenne in whatever way I could. But knowing about it also means that I know exactly what is coming for Luke.
I don’t want to ever have to write about the day I lost my son. So please please help us create awareness of Duchenne on this Duchenne Awareness Day. It couldn’t be easier – all you have to do is share our story, or change your social media picture to the
Duchenne Red Balloon and share the Duchenne posts you see in your news feed today. These things will only take seconds from your life but could add years to the lives of children with Duchenne and will help to give their grieving parents some relief.