To have good health is the most important thing in life and it must be very hard to face the future with this kind of challenge. Give him my best wishes and hopefully they can find a cure in his lifetime.
You know those byteball tokens that we got recently? They do support a lot of research into childhood diseases. All you have to do is let the them use your phone/laptop when it is charging to crunch numbers. I've been doing it since I got them. Every little bit helps.