Goodentree's video: The Kitty Snow Rescue game starring Nora - goodentree com

My lovely wife decided to save some winter snow in our freezer. Nora and I got it out this past weekend and we began to play a game that Nora invented on the spot called: Kitty Snow Rescue. Nora explained off-camera that the snow kitties were stuck on an iceberg, so knocking them off was saving them. She's 6. Anyway, Nora and I had lots of fun. My wife is the one laughing occasionally in the background as she prepared dinner. Nora was born with a genetic disease called SMA Spinal Muscular Atrophy. Nora has the most severe form Type-1 which is degenerative and terminal. The disease, similar to ALS, affects the motor neurons so it makes her unable to move her muscles. The muscles atrophy or grow weaker from not being used. Nora was born perfectly healthy, then she slowly lost her ability to move her legs about 4 months later. It continued, with her chest, neck, and arms the same way. At 6 months old, she could no longer swallow anymore - she's fed with a feeding tube in her belly and if she's not suctioned constantly, she will drown on her saliva. She is extremely fragile to colds/sickness, Her brain is not impacted, but her speech is since her tongue is unable to move. Most can't understand her, but we can, most of the time. SMA children do not live more than a few years like this, but with the proper medical devices and round the clock care, and luck, she has somehow made it to 6. The disease hasn't stopped, and continues to weaken her. In the last year, she lost her ability to move her face, and can no longer smile. We miss her smile almost more than anything else. Nora will never recover, never be cured, never improve, she is so amazing, and brave, and wonderful, and smart, but we will loose this battle, and loose her. So these videos are Nora's legacy