Sam suffers from a very rare, terminal brain disease called Vanishing White Matter Disease (VWM)
Joined October 2014
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Happy 4th! So grateful for friends who always make sure Sam can be part of the celebrations.....
#4thofjuly #fireworks #leukodystrophyawareness #vwmff #vwm #findacureforvwm #samvsvwm #vanishingwhitematterdisease #vwmfamiliesfoundation #livingwithaterminalillness
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Sam is sooo excited to have his favorite @NiallOfficial judging @NBCTheVoice
#vwm #leukodystrophy #livingwithaterminalillness #samvsvwm #vanishingwhitematterdisease #vwmff
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It's Sam's turn finally. He had his first Covid vaccine this morning (so far no reactions). This is such a huge relief for our whole family.
#crushcovid #vaccinated #covidvacccine #vwm #vanishingwhitematterdisease #highrisk #Leukodsytrophy
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Halloween 2021. Loki in a gold space chariot! #avengers #avengerscostume #loki #lokicostume #lokicostumes #wheelchairlife @LokiOfficial @twhiddleston #vwmff #vwm #livingwithaterminalillness #wheelchaircostumes #wheelchairhalloween #halloween2021 #HalloweenTODAY #Leukodystrophy
A few favorite costumes from past Halloweens.Putting the final touches on this year's costume today.
#wheelchairhalloweencostume #wheelchairhalloween #homemadehalloweencostume #Halloween
This fall we decided to sign Sam up for baseball with the Miracle League. This was one of the best decisions we ever made, Sam LOVED it and we loved meeting other families who are also raising severely disabled children. Sam can't wait to be back in the spring! #miracleleague
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#readyforcampmagic
Watch tonight at 7 to see Sam's camp story at:
holeinthewallgang.org/manyhe…
@holewallcamp @vwmff
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Picked up Sam from @DoubleHRanch this morning after a great few days of summer camp! So grateful to Double H for finding a way to make this happen this summer.
In Sam's words "I had a great, great time! It was so fun!"
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Loving our @UlfUnited hoodies that arrived today!
#weareallinthistogether #leukodystrophy #ulf #unitedleukodystrophyfoundation @VWMFamilies @FindaCureforVWM
It's #rarediseaseday. Doing our part to raise awareness by completing the @vwmff Rare Disease Day Virtual 5k.
$9,400 raised so far.. The link to donate will be open for the rest of the day for any last minute donations
charity.gofundme.com/o/en/ca…
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It is impossible to feel sorry for yourself when Sam, who can even sit without help, wouldn't change a thing about himself.
His incredible positivity keeps us going, we are so lucky to get to spend every day with him.
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Sam insisted on watching the #superbowl with one of his most prized possessions, a ball with a message just for him from his favorite @nyjets player @samdarnold (naturally!)
Huge thanks to the amazing @brabinowitz56 & @jacquie_rabi for getting this ball for Sam
#nyjets #nyjetsfan
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Brightening up the neighborhood today....
#rainbowhat
#rainbows #vwm #findacureforvwm #samvsvwm #vanishingwhitematterdisease #leukodystrophy #vwmfamiliesfoundation #livingwithaterminalillness #leukodystrophyawareness #sambuck
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Sam is very passionate about his soccer right now and absolutely loves @ChelseaFC
Unfortunately yesterday they lost a game that Sam expected them to win. He did not take it well. This was taken after he had calmed down 🤣
#chelseafc #premierleague @premierleague #vwm #samvsvwm
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One year ago today Sam got to meet @NiallOfficial thanks to @jacqui_rabi & @brabinowitz56. Sam still talks about this every. single. day. This was easily one of the best nights of Sam's life, which is saying something as he has experienced a lot in his short life!
#NiallHoran
Sam had a great time cookie decorating on this rainy day.
Sam's school PTA sold cookie decorating kits to benefit the @VWMFamilies raising an incredible $3,825! So grateful to our community and the Glenville School PTA.
@GPSDistrict #glenvilleschool #vwmff
