Adnan's story

Adnan: My name is Adnan. I’m 15. My mum has Pompe disease, which basically means that her muscles are a lot weaker than they would be. So she has trouble sometimes getting up, lifting heavy objects, bending down, things like that. I’ve known for a long time that she had an illness that made her a bit weaker.

Me and mum visited a doctor, and he explained to me in detail what it meant for my mum to have the disease. It could be quite serious, and we think that was when it really hit me, and it really became a big thing for me.

Yes, of course, if she’s ever having a bad day or in a bad mood, I’ll try to be there for her.

Lama: I can sometimes see in his eyes that there is pleasure, that he is happy because he’s done something that I cannot do, and he did it because he loves me.

Adnan: Yes, so I do things like taking out rubbish, unpacking the dishwasher, taking out the washing, helping out with shopping.

I feel like the things I do are very normal. It’s things you’d normally do around the house – as the man of the house.

Lama: A lot of times, I’ll become very emotional because I’m the one who should be taking care of him and doing things for him, not the opposite. I try to balance that by being there for him whenever he needs me, and he knows that.

Adnan: I don’t feel as though I’m being burdened. I love my mum all the same. We’re still able to do things together and enjoy each other’s company. We watch movies together. Sometimes we can just talk. Sometimes we like to play chess, board games, things like that.

Lama: I’ve always told him I want you to be whatever you want to be. And no matter what that was I’ll always be there to support you. So I hope that he will find his true passion.

Adnan: She really cares a lot. She’s very loving, very nurturing. If she’s happy, I’m happy.