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Why Duchenne Has Been a Merciless Hurricane for Our Family Tree

All in all, seven boys over three generations of my family have been diagnosed with Duchenne Muscular Dystrophy (DMD). It took the lives of four of them (all aged between 16-19). One died from other complications in infancy and two of them, including my son Luke and my cousin Brian, 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 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 February 28,1996 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 eight years younger than me, and Mark and I loved to spoil her. Mark was less than two years older than me. 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; this way 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 realized the way Mark’s head was bobbing looked really funny.

I got to school that morning and I remember Mrs. McKenna, a teacher, was talking about a funeral. I turned to my friend and said, “I’ve never been to a funeral.” (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. My cousin had called, wanting to see how Mark was. I remember going out with my friends that evening. On my way home that night I bought two chocolate ice lollipops, 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?” 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 lollipop in the freezer, where it stayed for a very long time and was never eaten.

I remember I fell asleep quickly that night, which never happened. I remember waking suddenly at 2:10 a.m. to hear familiar voices coming from our living room. I heard the footsteps of my aunts approaching my room as I pretended to be asleep. They told 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 fiber of strength I had not to cry.

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 walked into the room where Mark was lying on the bed. He had drifted into a coma around the time I had woken up. I remember being told 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 rites. I remember the moment he died at 5:07 a.m. on the 29th February.

My first question was, “What will we tell Christine?” She was only six 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.

Duchenne had taken my only brother when he was just 16 years, one month and nine 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 he could be here to meet my boys. 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, people would say to me, “At least you know about the condition.” And yes, that is true. Knowing about it in advance meant I had always kept a thumb on the pulse of what was happening in research and 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.

Follow this journey on Leap for Luke


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