Deacon has Developmental Epileptic Encephalopathy 41, it’s an ultra rare genetic mutation that happened randomly. It causes CVI, drug resistant epilepsy, developmental delay, low muscle tone and feeding difficulties which have resulted with a feeding tube.

We love to keep Deacon involved in EVERYTHING we do as a family but it is starting to get difficult since he is growing so quick and so tall! Currently his wheelchair isn’t the comfiest for walks and he’s about to grow out of his stroller.

So, we would love to have this bike! We’ll be able to access more parks and go on more walks. We will also finally be able to go on bike rides! Since he doesn’t have the best head control we haven’t been able to use the “normal” carriers that attach to the back of bikes BUT with this he will be supported the way he needs to be! His smile is so big when we are outside and I would love to see it more this summer!

He needs the bike so that he can easily participate with the family while we are outside! We would love to be able to take him on bike rides and walks easily with his little brother! Plus it allows more time for fresh air and will let us easily access the parks around us and let him be comfortable while doing so!