IF you don’t get better!

Sebastiaan Kuiken, our son and brother (age 40), was 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 will literally fall apart!

Sebastian was: strong as a bear, athletic, positive and willing. He was super handy. In addition to his work, he also volunteered for 11 years with the fire department and drove various vehicles.

Four years ago, he was finally able to fulfill his dream; work as an ambulance driver.

Symptoms of ALS caused that dream to be abruptly abandoned.

At this point, he can barely use his hands and is increasingly dependent on others. Many practical tasks, such as putting on a coat, spreading bread or cooking a meal, are hardly possible anymore. Meanwhile, he can no longer drive a car, which limits his freedom and he always has to ask for help to get somewhere. For someone who is always busy and busy, this is a terrible nightmare come true…

What now?

There’s not much you can do to make his life easier or more fun. However, one thing he would greatly benefit from is the purchase of a (disabled) bus with a special joystick control. Joystick control of steering functions and (at a later stage) throttle and brake controls. This would give him back his freedom and independence, which will significantly increase his quality of life.

A bus (second-hand) with the necessary modifications costs approximately €47,500.

Even if the disease spreads, the joystick control can always be adjusted so that he can use this bus independently for as long as possible. If he were to be completely confined to a wheelchair, he would still be able to take this bus with his family.

How can you help?

It is hard for his wife Chantal, their daughters aged 11 and 9, family and friends to see him struggle like this, the sadness is great. We try to make the best of it together, see what can be done, do fun things and make beautiful memories. Unfortunately, we cannot fully finance the purchase of a modified bus ourselves.

We are therefore asking for your help in raising this amount. We know these are tough times financially, but if you can, please help us give Sebastian some of his independence and freedom back?

Small amounts also help and sharing is also caring.

If more money is donated than is needed for this bus, we will donate it to the ALS Foundation.

Love from Jan and Marian Kuiken,

Ramona, Felicia in Elco

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