The three brothers: Tobias (8 years old, loves football outside on the field but also FIFA 18 on his PlayStation), Joris (6 years old, always happy and joyful. As he breaks around 12 pairs of glasses per year he is treated as a VIP at the local optician) and Pepijn (1,5 years old and fan of his cuddly bear but he’d love to have a dog as a pet) live with their parents Xander and Annelot in Haarlem, the Netherlands.

Joris has been diagnosed with PKAN on November 11, 2014. At the moment he attends special needs school “De Parel” (The Pearl) very close to their home. Xander and Annelot both have a job (Xander fulltime and Annelot parttime) in Amsterdam. With these blogs they want to give you an insight in their daily life as a family of five persons with a child affected by PKAN. 

Does he sleep through the night

We are regularly asked whether ‘he’ is already asleep.  With ‘he’ the person who asks us this question refers to our youngest son Pepijn. He is now one and a half years old and indeed starts sleeping through the night. He does give a scream every now and then, is – often – awake around 5 o’clock and sometimes has a short nightmare. But he is number 3, so we know that that goes with it and we don’t really worry about it.

Whether our second son Joris sleeps through is no longer asked, he is 6 ½. He “only” wakes up 9 out of 10 nights. And when he wakes up, he is always panicking. He can not really say what the problem is – is he hurt somewhere? a bad dream? looking for a blanket? something else? – because talking is difficult for him. He sees very badly in the dark and then seeks comfort. In addition, he falls easily so with that combination you can really not let him be when he is awake already. Usually he tries to get out of bed in his panic and he can hurt himself. In practice that means that with the first sound from his room, one of us jumps out of bed and lies down next to him to comfort him and then often stays there for the rest of the night. Initially we were thus folded in his Thomas the Train bed. Very cozy, but not really beneficial to a good night’s sleep. That is why the Thomas the Train-bed has now been replaced by a more mature bed. We fit next to him and can then choose between Winnie the Pooh, Paddington Bear or Camel as a pillow.

When we say that this means that we have had broken nights for 8 years, friends sometimes ask how we can stand it. Actually, the solution is quite simple, we go to bed early, hardly drink a drop of alcohol and fully enjoy the unique nights that we can sleep through. It is also nice to occasionally share experiences with the parents of children from the school of Joris, because they understand and it is good to know we are really not the only ones.

And for the attentive reader: yes, our eldest 8-year-old does indeed sleeps around the clock. He sleeps one floor higher and sees nor hears anything of our homely night life. And… Paddington Bear-pillow sleeps a lot better than Camel-pillow!