It’s so easy to focus all our energy on how ‘special’ Luke is. Special, not just because he and his bother are more precious than anything in this world to us, but because of the life that he will live and the challenges he will face, in what will likely be a short life. But what’s more important than his ‘special’ needs, is the need to recognise that Luke, at heart, is just a little boy, no more and no less.

Like most 4 year olds, he makes his mummy laugh, he makes me cry, he drives me crazy and shows me what is really important in life. Just yesterday I found him peeing on my coffee table and laughing his heart out at how naughty he was for doing it –  yes, he was punished, but my goodness it was funny. All 4 year-old boys do that, right?

Maybe I shouldn’t mention how he let us down a bucketful the other day by telling his teachers he said the ‘F’ word in the car on the way to school. (He didn’t hear that from his mummy lol). Now he even manages to pull a chair over to the bench and climb up to get the sweetie tin and help himself to as much of the contents as he can before I catch him. He and his brother fight ding dust but they also kiss each other good night and sometimes even share. Being a little boy means he’s a little explorer. Every nook and cranny of every little thing has to be explored in great detail and if something should be broken, well by golly it’s time for him to get the tool box out and fix it. As a typical P1 pupil, he never tells us what he did in school and just the other week said ‘that’s enough talking Granda’ when his he tried to ask him about it. Like most little boys his hands are always sticky, his face covered in food, he has ice cream in his hair, and juice spilled down his jumper.

He wants to drive a motorbike and be a farmer with a John Deere tractor. He loves to do ‘jobs’ no matter how big or small – he might need to mow the grass, or plant a tree, or use his screw driver to fix the door hinges. His favourite question is ‘why’ and I usually have to make up the answer because the question is so random. He loves outside and mud and water, and all 3 together is even better.

He’s impatiently waiting for Santa. he believes in the tooth fairy and the boogy man, and fairies and any other mythical creature we tell him about.

He’s a typical little boy who is madly in love with his mummy, he still plays with my hair when he needs comfort, he never wants me to go anywhere and he spoils me with endless kisses and hugs (please tell me that bit doesn’t ever end ).

Luke doesn’t know that he is different. He doesn’t know that he will never drive that motorbike or be a farmer. He doesn’t know how much he will one day depend on the brother he fights with. He doesn’t know that in a few years he won’t be able to carry that tool box, or cut the grass or even have the strength to turn the screw in the hinge with his screw driver. He doesn’t know that in the not too distant future he won’t be able to stand up and pee on the coffee table lol. He doesn’t know his days of playing in the mud are numbered.

He just knows his name is Luke O’Hanlon and he is 4 and life is so much fun. And that is just how we want him to think. And so you see, Luke might have tough challenges ahead but just being a little boy is way more important than all of that for now. He’s a son, a brother, a grandson, a nephew and a cousin. He is all these things before he is a Duchenne patient.