Tomorrow is World Duchenne Awareness Day. And in just one week, my little boy turns 18. I keep calling him my little boy because, no matter how old he gets, that is who he will always be to me. The little boy I held. The little boy I watched grow. The little boy I never imagined I would one day have to watch lose so much. I should be spending this week thinking about his birthday. About his cake. About his presents. About making sure he feels loved. About watching him turn 18 and wondering where all those years have gone. But somewhere in the middle of all that excitement, there is a pain that never really leaves. Because I know what Duchenne has already taken from him. And I know it isn’t finished. That is the part people don’t always see. They see Ethan smiling. They see him laughing. They see an incredible young man who is about to turn 18. And he is all of those things. But I also see the things he can no longer do. I see the little boy who used to run. The little boy who could get up from the floor. The little boy who didn’t have to think about whether his body would let him do something. I remember those things because I was there. I watched them happen. And I watched them disappear. There is something incredibly painful about remembering what your child could do, while knowing they may never be able to do those things again. And there is something even more painful about knowing that no matter how much you love them, you cannot love this disease out of their body. You cannot take it away. You cannot bargain with it. You cannot promise your child that everything will be okay. You can only stand beside them. You can only love them. You can only fight for them. You can only try to make the life they have as beautiful as possible. And sometimes, that is the hardest thing in the world. Because I don’t want to be the mum who has to make every moment count. I want to be the mum who gets to watch her son grow up without constantly thinking about what he might lose next. I want to be the mum who can look at 18 and just see 18. Not a milestone that feels precious because of everything we know. Not a birthday that makes us think about all the boys who never got to reach it. Not a future that comes with a fear we cannot switch off. Just 18. Just my son. Just a birthday. But Duchenne doesn’t let us have that. So yes, we will celebrate Ethan. We will celebrate him with everything we have. We will make him feel loved. We will make him feel special. We will make memories. We will smile. And I know I will probably cry. Because I am so proud of him. But I am also heartbroken for him. Heartbroken that he has had to grow up with a disease that has already taken so much. Heartbroken that he has had to learn about things no child should have to learn about. Heartbroken that there are things he wants to do that his body may not allow him to do. And heartbroken that, while other people can look at the future with excitement, we sometimes have to look at it with fear. I wish I could change that for him. I wish I could give him back every bit of strength Duchenne has taken. I wish I could give him a future without this disease hanging over it. I wish I could take every difficult day, every frightening appointment, every loss, every worry and carry it all myself. Because that is what you want to do as a mum. You want to protect your child. Even when they are 18. Even when they are grown. Even when you know you cannot protect them from everything. And that is why World Duchenne Awareness Day matters to us. Because Duchenne is not just a word. It is our life. It is Ethan’s life. It is the reason we celebrate things other people might never think twice about. It is the reason a birthday can feel like the most beautiful thing in the world and the most painful thing in the world at the same time. It is the reason we keep fighting. And it is the reason we need people to understand.