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.

“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!”

– Sam vs VWM Blog

There are some deep lessons to be learned here. May they all keep fighting the good fight for many years to come.

You can follow Sam Buck on his blog right here on WordPress and on Instagram and Facebook. You can also read Sam’s whole story, learn more about VWM, and find out about donating on ULF.org.

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#Repost @amypoehlersmartgirls • • • • • • Repost from @littlelobbyists • 38/100 – Samuel, age 9, Connecticut To Sam, every day is the “best day ever.” He is kind and funny and always has a huge smile on his face. He loves to play with action figures, race cars, and spend time with his friends. Sam also has #VanishingWhiteMatterDisease, a very rare untreatable and terminal brain disease which causes the white matter in Sam's brain to disappear over time. Sam enjoys school, where he gets the therapy he needs and sees the friends he loves. He uses a wheelchair to get around. Sam’s mom Allyson says: "After four years on the waiting list, we got a #Medicaid waiver. It means everything. Sam needs equipment – wheelchairs, activity chairs, bath chairs, standers, lifts – much of which is not covered by our primary insurance. Without Medicaid, or with cuts to Medicaid, our family will not be able to afford to properly care for him.” Medicaid covers things most insurance does not – so kids like Sam can live at home, where they belong, with the families who love them. #MedicaidMatters. To our families, it means everything. * * * * * * * * * * * * Do you have a child with complex medical needs and disabilities? Visit our website to share your story with us! http://www.littlelobbyists.org/storyform [image description: boy holding onto his mom’s back as they walk in a wooded area. Both boy and mom are smiling broadly..]

A post shared by Sam vs. VWM (@samvsvwm) on Sep 2, 2020 at 11:37am PDT

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Halloween 2019 in the books! #sgtpepperslonelyheartsclubband #sgtpepper #beatles #yellowsubmarine @paulmccartney @ringostarrmusic #vwmff #vwm #findacureforvwm #samvsvwm #vanishingwhitematterdisease #leukodystrophy #vwmfamiliesfoundation #livingwithaterminalillness #leukodystrophyawareness #sambuck #rareasone #wheelchaircostume #wheelchairhalloweencostume @thebeatles #homemadehalloween #homemadehalloweencostume @liverpool

A post shared by Sam vs. VWM (@samvsvwm) on Nov 1, 2019 at 5:36pm PDT

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This post and the comments are everything. Thank you. #Repost @samsbestdayever • • • • • • Greenwich, Connecticut Hi! As @creativebeann helps take this project to new heights, she suggested I introduce myself so here we go…. . . 👋🏻 My name is Deirdre Burke and I am one of the lucky teachers who has the privilege of working with Sam on a regular basis. As a physical education teacher, my job (primarily) is to play, have fun, and teach important life skills. I was SO ready to get Sammy in the gym so I could be his teacher but I quickly realized Sam is the teacher, and I’m the student. He has taught me to find the positive in each and every day, relax and enjoy what is going on around me, focus on those that value me and love me, have passion in all that I do, and take breaks throughout the day to do what makes me happy. Sam has (unknowingly) gotten me through some of the toughest times in my life. This beautiful kid has changed my life. .. . . For those reasons and SO many more, I started the BEST DAY EVER project. Within days this project became a TEAM effort with so many people helping in various ways to make this project impactful and meaningful. I am so excited to start introducing you all to the many faces behind the BEST DAY EVER project. 💕 💕 💕 . . . What has Sam and his family taught you?!? Comment below 👇👇👇

A post shared by Sam vs. VWM (@samvsvwm) on May 26, 2020 at 7:52pm PDT

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The whole gang. Hermione, Voldemort & Harry. #voldemort #nagini #hermoinegranger #hermoine #harrypotter #dragon #harrypottercostume #dragoncostume #wheelchaircostume #wheelchaircostumes #disabledhalloween #samvsvwm #vwm #vanishingwhitematterdisease #leukodystrophy #findacureforvwm #vwmff #vwmfamiliesfoundation #livingwithaterminalillness #leukodystrophyawareness #sambuck

A post shared by Sam vs. VWM (@samvsvwm) on Nov 1, 2017 at 6:32pm PDT

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Very proud of the cake he decorated yesterday.

A post shared by Sam vs. VWM (@samvsvwm) on Jan 28, 2019 at 2:54pm PST

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First outing for Sir Sam, Robin Hood and Maid Marion. #homemadehalloweencostume #homemadehalloween #wheelchairlife #wheelchaircostume #wheelchairhalloweencostume #knightcostume #horsecostume #robinhood #maidmarion #robinhoodcostume #samvsvwm #vwm #vanishingwhitematterdisease #leukodystrophy #findacureforvwm #vwmff #vwmfamiliesfoundation #livingwithaterminalillness #leukodystrophyawareness #sambuck

A post shared by Sam vs. VWM (@samvsvwm) on Oct 26, 2018 at 5:47pm PDT

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#kingsam

A post shared by Sam vs. VWM (@samvsvwm) on Oct 9, 2020 at 10:21am PDT

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For the last 4 years, ever since Sam has needed a wheelchair to get around, I have been making him somewhat elaborate Halloween costumes that always include his wheelchair. It is a lot of work. I start at least 6 weeks before Halloween and spend countless hours making these costumes. A lot of people wonder why I bother, especially as it makes the already busy months of September and October even more stressful. I don’t do it just because Sam loves his costumes (which he does); I don’t do it just because I enjoy making them (which I do); the real reason I do it is because Halloween is the only time of the whole year where people aren’t looking at Sam in his wheelchair with pity. It is the only time of the year where I can make sure it is cooler to be in a wheelchair than to not, where other kids look at Sam not with pity but with envy, wishing they too could be riding in a Formula 1 car or be Harry Potter on the back of a dragon. That reason may seem petty or silly to some, but for us, who spend our lives getting stared at and looked at with sympathy, it is a small reprieve. A few days of the year where nothing is better than needing a wheelchair, that makes it all worth it. #wheelchaircostume #wheelchaircostumes #wheelchairlife #wheelchair #samvsvwm #vwm #vanishingwhitematterdisease #leukodystrophy #findacureforvwm #vwmff #vwmfamiliesfoundation #livingwithaterminalillness #leukodystrophyawareness #sambuck

A post shared by Sam vs. VWM (@samvsvwm) on Oct 27, 2017 at 4:39am PDT