My nephew Peyton of age 11 has had almost total body paralysis from spinal muscular atrophy since he was a 1 year old. It is a neuromuscular disease that progresses to usually get worse over time, but my sister and her husband have been very active in getting him every possible trial treatment available, and so far his condition has more or less stabilized.
What this means is that he can bring a fork to his mouth and eat by himself, although with difficulty, but he cannot walk, stand, or even sit without a prop. He would find it difficult if not impossible to read a book without someone turning the pages for him, and he can write very slowly and very little.
Peyton of course does not mourn what he never had, and his cheery, and unusually loud disposition (indeed the disease has in no way affected his lungs) makes everyone laugh.
I still like to help carry him around, although it has been an endeavor since he has reached over 100 pounds. His family stays healthy and works out in the gym so that we can lower him into the water at the beach each summer and carry him up and down stairs to visit each other.
In the past, money donated to Pathways for Peyton, a non-profit organization, has gone to pay for wheelchair accessibility at beaches. People who do not have a disability do not usually realize how impossible it is to carry elderly or disabled people across sand, yet going to the beach is a beautiful experience that everyone should be able to access.
Money donated to Pathways for Peyton will go towards this and other public wheelchair accessibility endeavors, so that all people who must live their lives in wheelchairs can have greater opportunities. It may also go toward new equipment and technology that makes his life and the lives of his friends with SMA easier.