Remember the pain you felt when that hot stove caught your finger by surprise? And what about the lingering hurt from the paper cut you received while opening up that envelope? Now combine both that pain and lingering hurt with the worst body discomfort you have ever had, and imagine that suffering being inflicted 24 hours per day, seven days per week, 365 days per year. To make matters worse, picture the person in that excruciating situation is someone you deeply love, and no matter how hard you try, no matter who you turn to for help, you can't take away his or her pain. Hard to face, isn't it?

Most of us have to witness the suffering of a loved one for a relatively short period of time, but Jonny Kennedy and his mother/caregiver Edna endured this physical and emotional pain for all of his 36 years of life. As you know from watching the difficult but life-affirming documentary The Boy Whose Skin Fell Off, Jonny suffered from a devastating genetic condition known as dystrophic epidermolysis bullosa (EB). What those fancy medical words mean is that Jonny's skin actually fell off with the slightest touch of a finger, contact with tight clothing, bump, bruise or even if he scratched an itch, leaving Jonny with huge and painful sores all over his body.

For 35 years Jonny and his mom dealt with his case of EB as best they could, but after receiving a diagnosis of skin cancer and knowing his life was probably going to end in his 36th year, Jonny made some really big decisions. Being the big-hearted person that he was, Jonny wanted the final months of his life to be documented on film in order to raise both money and awareness for the EB charity known as DebRA. Jonny also wanted his loved ones and friends to help him live his life and to accomplish goals on his life list. To quote country singer Tim McGraw, Jonny showed us all how "to live like he was dying."

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