Can you do something for me? Will you take just a minute to think of your life, your daily routine, the things you do each day, the activities you enjoy. Think of the ordinary mundane things you do that allow you to live a normal life… tying your shoe lace, brushing your hair, running to answer the door, eating dinner, hugging your loved one’s good night.
Now with that in mind, can you imagine over hearing that soon you may never walk again? How would you feel finding a piece of paper that says soon you will not be able to lift your arms to feed yourself, or hug your mum or play your favourite games? Can you imagine how scared you would be to find out that in the not too distant future, something as primitive as breathing will be impossible for you to do alone. Imagine hearing from a little child that you are so ill, you may not live much beyond the next decade! Scary huh? Now imagine that it is your child who will hear these things about themselves! Now it’s not just scary, it’s gut wrenchingly heart breaking!
When my son Luke was diagnosed with Duchenne Muscular Dystrophy (DMD) I made a promise. I promised that I would use every ounce of strength I had in me to try to save him. I promised that I would push myself to the limit to make sure that Duchenne wouldn’t take him like it took my brother and 3 uncles before him. I promised that I would make things different. I would change what having Duchenne means and that while doing that I would make sure that he was the happiest little boy on earth.
To keep my promise, I’ve told thousands of people our story. I’ve told them what having Duchenne means, I’ve told them what will happen Luke and I’ve told them that I don’t want to lose my baby. But the risk of awareness building is not lost on me and for a while now, I’ve worried about how Luke may feel when he hears snippets of information. How will I console him? How will I ease his worry and fear? And how will I keep my promise to make him the happiest little boy in the world while also raising vital awareness that will help me keep my promise to save him? It’s a catch twenty-two that I wish I could hide from. Am I wrong to create awareness? My opinion on this changes often but deep down I know that the only way I can save Luke is to tell people about him so that they will help me do all that can be done to keep him alive and well and happy.
They say great love and great achievements involve great risk. I love both my children more than life itself. I will do anything to save Luke from the clutches of this cursed disease, and I will do anything to spare Coen the heartache of losing his only brother. And so, I believe it is worth the risk and that I must continue creating awareness while at the same time silently planning how to drip feed Luke the details of his condition in a way that he can understand. Right now, Luke thinks that he is the fastest runner and the highest jumper on earth, he thinks that he has big strong arm muscles and can beat anyone in arm wrestling. He thinks that he will grow up big and strong just like any other 5 year old boy believes. He knows he has sore legs and sometimes little boys with sore legs use a buggy. He knows that some day when he is too big for his buggy, mummy will get him a cool wheelchair, and for now that is all he needs to know.
People always tell me to let them know if there is anything they can do to let them know. Well I don’t always need people to raise money or organise an event or jump from planes. What I would like to ask people today is to help me keep my whole promise. I can’t stop creating awareness. By doing so I would be giving up on the possibility that I could be part of a movement that is fighting hard to save little boys like Luke. But, you can help me by reducing the risk of the emotional train wreck that is headed for Luke and the rest of my family. You can do that by treating Luke just like any other 5 year old. You can organise inclusive birthday parties and activities so that Luke is not isolated from his friends as he grows older and his condition takes hold. You can educate your children on disability. If they know Luke personally, you can drip feed information to them that is age appropriate so they don’t drop a bombshell on little ears. If you’re not sure what to say to your children, then you can talk to me about it. While I’m not naïve and I know that I may not be able to save Luke, there is a possibility that we will and it is this message of hope that Luke will grow up with. You can help me promote this message of hope so that with love for Luke we can achieve great things.