Sam VWM
@SamvsVWM
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163
Following
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Sam suffers from a very rare, terminal brain disease called Vanishing White Matter Disease (VWM)
Joined October 2014
Sam is so excited to see his favorite artist @NiallOfficial on Thursday!! @NiallOfficial please play Night Changes on the 13th at MSG!! It's one of Sam's favorites and he'd love to hear it live!!
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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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I deciphered the clue for the #TSxCapitalOne #Giveaway! @CapitalOne, I’m ready to enter to see @taylorswift13 at #TSTheErasTour!
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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
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A few favorite costumes from past Halloweens.Putting the final touches on this year's costume today. #wheelchairhalloweencostume #wheelchairhalloween #homemadehalloweencostume #Halloween
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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: https://t.co/P74gPMW7V6
@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
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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 https://t.co/oVEhmYoK6U
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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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Today Sam's class was asked "If you could change one thing about yourself what would it be?" Considering Sam's severe disabilities, the answer could have been so many things. Sam's answer was "Nothing!"
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