Patrick (38) has been Villy’s foster dad for a month now.

Villy has not been with you very long yet. What did you know about sickle cell anemia?

Villy has been with us since March 2012, just over a month. When we knew he was coming, they told us he had sickle cell disease so I started reading about it. I’m more aware of it now but we’re still finding out what it means in practice.

How did Villy end up with you?

It was a very spontaneous process. Villy attends the same school my wife works at. She heard he didn't get on with his previous family and that they were looking for another place. We offered for him to come and join us. This way, we can also help him get through secondary school and beyond.

How long did he spend with his previous family?

About two years. Before that, he spent nearly five months with another foster family but that was only temporary until they found a suitable family. Villy has moved from family to foster family from a very young age.

How’s the sickle cell disease?

We have to make sure he drinks plenty of fluids because if he doesn’t, he’ll get a headache and sometimes, also a pain in his back. We do notice. I also learned his kidney doesn’t quite function as it should. And because he has to drink so much, he still wets his bed. We’re currently in the process of bed-wetting training.

How does that work?

He goes to the toilet every three hours. The signal from his bladder doesn’t quite reach his brain or the signal is too weak. And then his bladder gets too big. By going to the toilet on a regular basis, you hope it doesn't get so big and the signals make it to his brain. So that he wakes up by himself or knows when to go to the toilet. I go to bed quite late, around midnight and I wake him up to go to the toilet. After that, we sleep throughout the night. It’s going well so far. He doesn't always stay dry, but he’s improving.

Where do you find information about sickle cell disease?

I look on the Internet and I can also ask questions at the outpatients clinic. I had a couple of practical questions about going on holiday, for instance. We want to go on winter sports so I wanted to know a couple of things in terms of altitude, exertion, etc. He also used to play football but he stopped because he didn’t enjoy it.

And what about the winter sports?

They didn’t have a ready answer; ‘see how things go’. I don't think they had any experience with it, to be honest with you. The air and the quantity of oxygen are different. So what will be the consequences of that because his oxygen transport is more difficult anyway and that, combined with the cold weather, that’s another problem. But we’ll give it a go.

Have your lives changed?

Normally, it's just the two of us so that was a big change in itself. But you get used to it quite quickly. I can’t really imagine things being different now! As for the disease, we try to stick to a certain routine. You have to think of it all the time. That can be quite tiring mentally because you forget things and you think: what do I do? You need to give it a place in your life but we just deal with it.

Does Villy have any other family in the Netherlands?

His mother lives in Belgium and we are in contact with her. She calls us once every two weeks. She was there the day he arrived at our place. She visits us every once in a while and they chat away. They're brief chats of no more than an hour. That’s how it should be. Villy's from the Congo. I believe his father is in Rotterdam but we don’t have any contact with him. He has a stepbrother but I don’t know if he has sickle cell disease too.

What is a Jenaplan school?

In principle, it’s normal education but they work on the basis of the child. They’re all combination groups, groups 6, 7 and 8 together. They all have a buddy and if they get stuck, they help each other out. But it’s just like normal education. The advice was for him to move on to senior general secondary education and he attends a normal school for that type of education.

Will you join a patient association?

No idea. We’re being confronted with so many different things. There’s still so much to organise.

Such as?

Registering him with the local authorities, getting prescription sunglasses, doctor stuff. We’ll be going on holiday soon, so we have to get organised. Practical things, clothing, etc. We’ll deal with that first and then, we’ll take it from there.

How do you think things are going?

When we received all that information about sickle cell disease, we were a bit frightened. It will have consequences later in life and you don’t know what’s around the corner. But we just deal with it. We’ve made the choice to give Villy a chance for a good life.

Do you think you need to talk to Villy about it?

He does ask questions about it himself, what certain things mean, etcetera, and I explain them to him. Even though we've only known each other for a short while, we do have an open relationship.