Sebastiaan Kuiken, our son and brother (40 years old) were diagnosed with ALS this year.
ALS is one of the most serious and progressive disorders of the nervous system, in which all muscles gradually fail. Your life literally collapses!
Sebastian was: strong as a bear, sporty, positive and approachable. He was super helpful. In addition to his work, he also volunteered with the fire department for 11 years and drove the various vehicles.
Four years ago he was finally able to make his dream come true; work as an ambulance driver.
The symptoms of ALS caused this dream to be abruptly abandoned.
At this point, he can barely use his arms and is becoming increasingly dependent on others. Many practical actions such as putting on a coat, spreading bread or cooking food are hardly possible anymore. Meanwhile he can no longer drive the car, which limits his freedom and he always has to ask for help to get somewhere. For someone who is always busy and enterprising, this is a terrible nightmare come true…
And now?
There’s not much you can do to make his life easier or more fun. However, one thing would benefit him a lot and that is the purchase of a (wheelchair) bus with a special joystick control. Joystick control for the steering function and (at a later stage) also for accelerator and brake control. This would restore his freedom and independence, which will greatly increase his quality of life.
A (second-hand) bus, with the necessary adjustments, costs around €47,500.
Even if the disease spreads, the joystick control can always be adjusted so that he can operate this bus independently for as long as possible. If he were to be completely confined to a wheelchair, he could still hang out with his family on this bus.
How can you help?
For his wife Chantal, their 11 and 9 year old daughters, family and friends, it is hard to see him struggle like this, the sadness is great. Let’s try to make the best of it together, see what can be done, do fun things and create good memories. Unfortunately, we cannot fully finance the purchase of an adapted bus ourselves.
We therefore ask for your help in increasing this amount. We know these are tough times financially, but if you can, help us give Sebastian back some of his independence and freedom?
Even small amounts help, and sharing is thoughtful too.
If more money than needed is donated for this bus, we will donate it to the ALS foundation.
With love from Jan and Marian Kuiken,
Ramona, Felicia in Elco
