‘It is the set of the sails not the direction of the wind that determines which way we shall go’. (John Rohn)

This day 6 years ago I became a mum. My beautiful baby boy Luke finally made an appearance and life as I knew it was about to change forever!

When Luke was born I, like most new mum’s, imagined his whole life before him. I had visions of his pre school, saw him walk into Primary school and wondered who his friends would be. I wondered would he be into sports or maybe music or maybe something that hadn’t been invented yet? I wondered which secondary school he would go to and what new friends he’d find there? I imagined what job he might do when he’s older. Will he be academic, maybe he’ll be a teacher, or will he be good with his hands and do a trade? Or maybe he’ll be a scientist and make new discoveries. Who would he marry and how many kids would he have.? It’s funny how when our kids are born we have their whole lives mapped out in seconds when all they want to do is eat and sleep.

But the wind seemed to blow in a different direction and Luke was diagnosed with Duchenne, raising a whole new set of questions!

How will he manage in primary school? Will he be safe out and about? Will he find it hard to make friends when he can’t keep up and will someone stay with him to keep him company while the others run on? What will he do when his friends play sports? What if he likes a musical instrument but this horrible condition takes away his ability to even blow a whistle or hold up a triangle? When he goes to secondary school and his condition worsens will he be left behind? What if we don’t get a miracle and he doesn’t get to finish school before Duchenne wins? If he makes it to adulthood what job will he do and will he find love?

These are only some of the questions that play on the mind of a parent who has just been told their child has Duchenne, but on his birthday, just like I do every year, I promise to set the sails right so no matter the direction of the wind, Luke shall go forward and be great and have the best life that he can imagine, he will have the life that he deserves.

I promise to dedicate my life to help in the fight to change his condition from a terminal one to a chronic manageable one. I promise to use every ounce of energy I have to make his and his brothers’ lives as fulfilled as I possibly can. I promise to instil in him the knowledge and belief that he is great, that he is amazing, that he can achieve anything he wants to in life if he works for it and that no matter the challenges that life may throw at him, he has the strength to overcome them and I will be there with him every step of the way (or at least until he has a girlfriend and doesn’t want me cramping his style lol).

I promise not to let my fear of this condition impact negatively on his life. And I promise that we will try with all we have to change what having Duchenne means for all with Duchenne.

But for today my Lukie, I simply promise you a very happy birthday. I hope you love being 6. 6 is the best age because it’s your age 💙💙💙.