Five years ago, I did a post about Halloween costumes for disabled children, and I thought it might be time to do another, but that rabbit hole led me to this remarkable young man and his lovely family. The Halloween-themed stuff will have to wait until tomorrow.
Meet 10- year-old Connecticut resident Sam Buck. Sam is slightly more awesome than other children his age, because he has to be. He suffers from suffers from Vanishing White Matter Disease (VWM), also known as Childhood Ataxia, a very rare brain disease that progressively affects the nervous system and causes the neurological system to deteriorate.
Sam lives with his parents and his sister and brother, and honestly, they’re all pretty amazing. Sam’s mom, Allison, started using social media to spread information about her son’s condition shortly after he was diagnosed 8 years ago, and she’s been hard on it ever since.
“Today’s Sam-ism, “I love being disabled. It’s so fun! Fun, fun, fun!” Said no one ever, except Sam.– Sam vs VWM Blog
“People wonder how we can cope day after day with a seriously disabled, terminally ill child. This is how. How can we get upset by Sam’s limitations if he doesn’t? His perspective is so unique, it allows us to be grateful for just being, so much more than we could have been without him. We are so fortunate for the daily reminder to enjoy every moment, especially when it feels like the world is falling apart. Only one thing is certain, every day we are all together as a family, every day we get with Sam is “fun, fun, fun!”
There are some deep lessons to be learned here. May they all keep fighting the good fight for many years to come.