8 November 2018, yesterday morning we left home to finally get this show on the road. After numerous
examinations, observations and scans Joris got hospitalized in MUMC. During the afternoon all specialists visited him again to have a final check up and see how he was doing. As we saw all doctors during the afternoon his evening meal
was green beans with an unidentifiable piece of meat. As a result he had french fries with a burger.
He asked me to sleep with him overnight but first all tears had to come out as he got terified. After about half an hour he was relaxed enough to go to sleep, but only if I would keep him company, my big fellow. Before he went to sleep, I told him that every time he woke up, he has to wake me up as well.
The first time he ticked my arm, it was next morning, 6 AM. That was a well night sleep. At least much better then expected. He was still afraid but fell asleep untill 6.45. At 7.30 we turned on the TV as that kept him distracted most of the time.
At 8.45 we brought Joris to surgery and then the longest day of my life started. I couldn’t sleep, tried to do some work, went for a lunch which was very odd. Then at 14.37 we received the great news that surgery went fine.
I have never in my whole life felt so rotten as I did today. When I saw your eyes and heard your voice all the first stress left my body and I knew we are able to restart your life dearest Joris.
During this journey we had over the past 16 months I realized that what Joris went through takes an iron will to get better, great determination to accomplish to get better and lots of support from his family and friends.
Althought we are far away from full recovery I have the deepest respect for Dr. Dings who showed the greatest knowledge on
this kind of epilepsy in the AMC of Maastricht and Dr. Braaksma of Kempenhaeghe in their work and research for epilepsy.
In the coming period I will be writing more blogs on this page to inform you and encourage all readers to donate to a Dutch fund to finance to do more research to help more kids and parents to help them with this disease as well. On 22 June 2019 I will climb Mont Ventoux (France)
on bike from Bedoin side and try to raise as much money as possible.
During the next days and weeks a digital fund will be created where I hope every body who reads this will contribute to fund ‘het epilepsiefonds’…
With deepest humility…..