Duchenne… What It Really Is!

 

What is Duchenne Muscular Dystrophy? This is a question I have answered hundreds of times. I usually give the generic spiel…it’s a severe, progressive, and life limiting muscle condition. One that will see my active 6 year old become a full time wheel chair user in the next few years, that will leave him all but paralysed by his Mid teens and one that will render him unable to breathe by himself by his mid to late teens and one which will stop his heart from working when his adult life is only beginning. But Duchenne is much more than that. I’m sure when Luke is older he will tell you what Duchenne is to him, but here is what Duchenne is to me:

 

Duchenne is a heart breaker. Not just because of the damage it does to the heart muscle but because when your child is diagnosed with Duchenne your heart shatters into a million pieces. Try as I might I will never find the words to describe the feeling. I literally felt my heart crumble to a million pieces inside my chest. Broken into tiny pieces that will never ever piece together again. But the heart break doesn’t stop at diagnosis. Instead your heart breaks with every fall, with every struggle to get up from the floor, with every waddling run as your son tries to keep up with his sibling, with every time you’re asked ‘mummy why am I tired all the time’? I am just at the beginning of this journey and I know the heart ache that is coming as I brace myself for housing adaptations, wheelchairs, and the more difficult questions that lie ahead. For me, the thought of one day having to bury my son is not just a bad nightmare, it’s a reality that is in my head every single day. How could my heart ever mend?

Duchenne is a game changer, a stealer of dreams. Everyone has dreams for their kids. They dream about what job they’ll do, what sports they’ll play, who they’ll marry, will they travel the world, how many grandchildren will they have? Duchenne changes all that! Luke will never play for the football team, he can’t run fast enough and his legs aren’t strong enough. He’ll never get his Ju Jitsu black belt, the risk of an injury Luke will never recover from is just too high. He may not reach much beyond his 20th birthday so his chances of marrying are slim to none. But I still have dreams for my baby, they are just different now. I dream that he might walk out of primary school when the time comes for him to move to secondary school. I dream that he will have compassionate, caring, and loyal friends who will help make sure he rarely feels lonely. I dream that I will be able to buy him a drink to celebrate his 18th birthday and then I dare to dream that I will celebrate his 25th Birthday with him and, even bolder still, I dream of a 30th birthday party…imagine that!! But my biggest dream…I dream that I can some day hold that little face and tell him ‘we won’, then we can all go back to ‘normal’ or something like it.

 

 

Duchenne is a constant reminder of the fragility of life. Without a miracle I will lose my first born son. That is a fact! So many people are trying to change that fact and for that I am truly grateful. Imagine for a second now that you know that your child will die before you…. How does that make you feel? Perhaps, like me, and so many others you’ve realised that you should have given one more kiss before bed time, that the spill on the living room carpet wasn’t such a big deal after all, that the new outfit you’ve spotted can wait because the smile on your child’s face when you bring home that toy they spotted is just too precious. On days when I need to see the positives, I would almost count myself lucky that Duchenne makes me see the value in every single moment and so that none are lost.

 

 Duchenne makes you realise what is important. It forces you to cut the crap from your life and focus on the good. It makes you question what you do, why you do it and how you do it. Time is precious and there’s none to waste. Time in front of the TV is now time spent outside or in the toy room or painting the walls… oops I meant painting on paper, on the table lol. Nights are no longer spent chilling with a fiction novel or curled up on the sofa, instead its research and planning for fundraisers for the vital funds that might one day lead to that miracle. Things that once seemed important fade into insignificance. I no longer care what people think of me so long as what I’m doing makes a positive difference to the lives of my children. Material things mean nothing to me but seeing Luke pedal a trike, something I thought he’d never do, is priceless. And for me, every decision is made only after asking ‘what difference will it make’?

 

 Duchenne can change your life for the better. Duchenne gave me my fight. It transformed me from a quiet, shy girl to one who will do everything and anything that might mean that one day I can have my miracle. I have to tell my son I tried, that I did everything I could. Duchenne gave me a determined, purposeful, and meaningful life. The years since Luke’s diagnosis have been the fastest paced of my life. They’ve been an emotional rollercoaster but every time Duchenne thinks it has me I look at Luke and fight back.  Because of Duchenne, I have new friends, others whose lives have been touched by Duchenne, amazing people who I feel blessed to know. People in our community who were once strangers have become friends and my bonds with my old friends who have stood by me are stronger than ever. Because of Duchenne, I became a confident, determined woman who is not afraid to speak out to right wrongs and it has given me opportunities to do things that I hope have made a meaningful difference to the lives of others.

 

I hate Duchenne with every fibre of my being but Duchenne has shown me the love that exists in the world. The love that our community has shown to Luke has brought me to tears. The love that my new Duchenne family share is something I could never have imagined. Duchenne in my life means that where possible I only do the things I love, be around the people I love and see love in the smallest of gestures.

 

Duchenne may have the power to pull my whole world down around me, and I know that it may one day break me, but I also know that it has empowered me and there’s nothing stronger than empowered parents.

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6 thoughts on “Duchenne… What It Really Is!

  1. What a lovely story you are so brave . You are just like my sister who’s twin daughter Eloise who is nearly 13, and also has DMD
    She was giagnosed at the age of five, and our hearts too shattered into millions of pieces.
    We pray for the best of the worst every day — x

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  2. thank you Claire for sharing your feelings on this horrible illness. Keep fighting because we will find a cure xxx

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  3. Reading your story took me back to when I was 3 years old and my big brother was diagnosed with DMD. He was 6 when he was diagnosed.. I’ve grown up with it for so long now and it almost broke my mum when my younger brother was born 3 years later with the same condition. We’ve never thought about what the future may or may not hold because we have had so much thrown at us and the boys get through it all with a smile on my face. Their achievements have made me so proud to be their sister. The fight is long but the memories along the way are way better than you could ever imagine! My older brother fights everyday to prove everyone wrong and doctors are dumbfounded after. No one can tell anyone who deals with Duchenne that they can’t do something because they don’t know what fighting is. I am now 24 years old and as a sister I’ve experienced more than people my own age and I know how hard it is but when someone tells you no, beat through it and change that no to a yes! 😊 Every mum who can get through a diagnosis can fight the whole way! You’re incredible!

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  4. My son reached his 32nd birthday, had a girlfriend and lived independently for the last two years of his life,his flat was party central and he had many friends, he was an inspiration to everyone who met him,it’s a heartbreaking illness and I hope there is a cure soon, for all the young boys,don’t give up hope my son never did x my sister set up dance for duchenne to raise money for much needed research, which is vital, one day there will be a cure I know it xxxxxxx

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