The Kokken Boys (TKB) association is all about planning for the best supports for Xavier and Aiden. TKB will aim to raise at least half a million dollars over the next five years to be sure the boys are provided with:
- Suitable beds, wheelchairs and other mobility aids for both boys to prevent scoliosis (spinal curvature) or other dysfunctional positioning. There will be a need to evaluate the fit of the wheelchairs often, especially during those growth spurt adolescent years! Proper positioning throughout life will prevent pressure ulcers and mean better breathing longer and better sleep.
- High quality ventilator support to aid breathing and sleeping during later stages.
- Appropriate transportation for wheelchairs to keep active and engaged with the world. Maybe we can develop a version of Aussie Rules for wheelchairs!
- A house appropriate for wheelchairs to maintain movement and independence. This will mean widened doorways, ramps, railings, modified bathrooms and kitchen so the boys can clean and feed themselves as long as possible.
- Respite care to help out mum and dad once in a while.
TKB will make donations, where possible, to support research seeking treatment and a cure for Duchenne Muscular Dystrophy.