“No child is as present
as the child that is being missed”
No child survives the PKAN disease. They usually die at a young age from this genetic, progressive disease where iron is stacked in the brain. The impact this suffering has on the child with PKAN and his / her family members is indescribable. Scientific research is in full swing and although the solution is getting closer, it is not there yet. Together we are committed to supporting the affected families and stimulating research. Give a child with PKAN a chance and help!
Day-to-day life with PKAN
“We mourn every day.
We mourn because every day we have to say goodbye to a certain expectation we had for and with our family. From the moment Joris wakes up around 5/6 in the morning until he goes to bed, we are “on” and everything revolves around him. That he is not hurt, does not scream and can join our family. Participate in our way because it is not the same with us as with others. As a family we do not do certain things that we would like to do otherwise. For example, going to a playground, having a nice dinner or doing something spontaneously is simply not possible.
We would lie if we said that it is not very heavy for all of us. Something only other parents of care-intensive children can understand. Without help from family and friends it is actually impossible to sustain. But we try to pick so good and so bad every day! One day that goes better than the other. And that is simply out of unconditional love for our three beautiful sons! We can intensely enjoy the smallest things. We all dance around the room when Joris can suddenly blow a whistle when he is six and we are all amazed when he has learned a new word. We all laugh so loudly when he proudly shows us his new orthopedic shoes. We are very proud of how he undergoes all his hospital visits and flirts with everyone in the hospital. And there are countless beautiful moments, small or large, that we don’t want to miss for the world with the five of us.”
(the parents of Joris)