Hope Im still on time..
This is a letter to my son, about his disease.

Thank you Helen for your stimulation to come along I don't think I would have done it otherwise. But it sure was a nice thing to do. It's part of his life and I'll put it in his book.

Journaling (hope I got all the english words correct):
Dear Bas, Borne (is the village we live in) 16 november 2007.
If you read this, you'll probably know this for a long time and undoubtedly have been faced with it., but through this letter youll know a litte more.
Right before you were born we had some though weeks while my dad, your grandpa was very ill. It was very difficult to see someone suffer while you can't do anything than just to be there. A week after the cremation you were born. We are, in spite of mourning, so enormous happy and intoxicated with joy. Until the doctor is coming for a visit. How nice, she's coming to see the baby I thought, but no. How could I think that. She had another message. You have a chronic metabolic disease. So it's never gonna heal. Our world collapsed. How terrible it is, what do we have to do. We immediately had to go to a special university hospital in Groningen. It became clear that it is so very important that we know. If you don't eat on a regular base, your glucose level can decrease all of a sudden. It can happen so fast that you even can get in a hypo. If we wouldn't do something, it could be possible that you even die. Particularly if you become sick with fever, or have to vomit, it is very important that your glucose level remains. That's why you have to have an IV once in a while. We have been well informed and got a feeding program at a dietician. Especially the first time it was very tough, Every three hours day and night, we have to feed, and after a couple of months we are exhausted. It is SO difficult to wake you up every time, whereas you're not even hungry, but you HAVE to eat. Fortunately after a period of time we can leave an extra hour in between. At this moment you are already 2.5 and your organs are more strong now, so we can leave more time in between. Although you are a poor eater, this sickness is controllable and in a way we are grateful. Grateful to know it. What if we wouldn't? We don't want to think about that.
The moment we got your results, there were still babies dying in the rest of our country. Thanks to a doctor who had a graduation project with test patients in our part of the country we were picked out in the heelpunction. In that way you are lucky. Because we got a good feeding diagram and advice what to do if you get sick, we can live a complete normal life and hopefully you too. In the rest of the country they now check on these metabolic diseases also, sot that's comforting. And you... so far you behaved so nice when you were in the hospital. Despite you were sick you were still giggling and acting funny. I made it much easier for us. We trust you will have the wisdom to handle this good. We wish you a lot of wisdom and strength, and we will be there for you.