Sam vs. VWM

This is his story of living with a terminal disease. In doing so, it permanently affects transmission of brain signals to the rest of the body.

On April 4, 2013 our lives changed forever when our son, Sam Buck, was diagnosed with a very rare, untreatable brain disease called Vanishing White Matter disease. Vanishing White Matter disease (VWM), also known as Childhood Ataxia with Central Nervous System Hypomyelination (CACH), is a very rare condition that destroys myelin, the brain’s white matter. It is one of about 40 conditions that affect the white matter of the brain known collectively as Leukodystrophies. There are currently only about 250 people worldwide who are known to suffer from the disease. VWM is a chronic and progressive condition, and is unusual in that periods of rapid and severe deterioration can be caused by minor head trauma, fevers and even anesthesia. Few sufferers survive more than 5-10 years after onset. While every patient is different, as the disease progresses, sufferers can expect some or all or the following symptoms: loss of motor skills (walking usually goes first, followed by ability to sit unassisted, speech, use of hands, head control and ability to swallow), loss of vision, epileptic seizures, vomiting, irritability, and comas. Some patients die during coma; others recover slowly, but never to the same level as before. Since Sam’s initial bump to the head in February 2013, we have already seen his ability to walk severely affected, and he has tremors in one hand. During periods of deterioration, his speech becomes slurred and he becomes very irritable and tired. Symptoms generally appear in young children (usually between 2 - 6 years old) who were previously developing fairly normally. The severity of the disease is strongly correlated to the age of onset. Unfortunately for us, Sam was diagnosed very young and seems to be progressing very rapidly - a suspicion confirmed when we met Dr. Van der Knaap, the world expert on the disease, in Chicago.

01/07/2026

Sam loves to write music, he asked to post his latest tune about !

12/17/2025

What is VWM exactly? This video does a good job of explaining the disease!

Vanishing White Matter (VWM) disease is an ultra-rare genetic disorder that targets the white matter in the brain, causing neurological symptoms. This video ...

12/13/2025

Watching his sister appear in the documentary, she's on the left and is seen twice at the end of episode 1. So cool!

12/07/2025

Sam had a great afternoon at the Christmas Party!

This organization is the best....so grateful to everyone who makes events like this happen for kids like Sam.

12/01/2025

16 patients, 17 caregivers, and 6 nurses still needed for this study - You will get $350 in compensation for 2 hours of your time!

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11/05/2025

Halloween 2025! Sam was his favorite singer, !

Its been a busy year, so Mom was happy to get off pretty easy this Halloween.....2 of Sam's friends came and took him out trick or treating which of course he loved!

Sam's Dad and brother were both away, luckily his sister is at University close by so came home to help out (Getting Sam ready is a 2 person job!)

Imogen dressed as Molly McIntire, her childhood doll.

11/03/2025

Sam with 2 of his favorite people, his buddies from Unified Sports!

https://bit.ly/47xXHMj

10/31/2025

Sam's first game!!

He's been looking forward to this for weeks and loved every minute of it. Unified sports is by far his favorite activity at the high school - we are so grateful this program exists at his school.

It was so heartwarming to see so many kids and parents turn up to watch them play, we are so lucky to live in a community that values and supports differently able kids like Sam.

10/06/2025

Sam has been waiting a while to see (the only one of his favorite artists he hadn't seen) , and he finally got to see him Friday night!

Shawn didn't disappoint. Great concert at one of our favorite venues.

09/30/2025

💙 30 Faces • 30 Stories • 30 Reasons to HOPE 💙

Day 30: Sam vs. VWM

Today we conclude our 30-day series with the story of Sam and his family, who navigate the challenges of raising a child with Vanishing White Matter (VWM) disease. Their journey is one of endurance, love, and relentless hope.

Read Sam’s full story here: 👉 https://medium.com/leukodystrophy-awareness/sam-vs-vwm-living-with-a-terminally-ill-child-84da450f06ed

As this campaign ends, let it also be a beginning, a commitment to continue raising awareness, fueling research, and supporting all families touched by VWM. 💜
VWM Families Foundation

09/21/2025

Best Day Ever yesterday celebrating one of Sam's favorite people in the world getting married.!

Congrats Deirdre & Matt!!

09/07/2025

Sam was super excited for this concert.

is one of Sam's s favorites, and he didn't disappoint! Sam loved every minute of it!

Address

1 Tennis Pl
Forest Hills, NY
11375

Website

https://samvsvwm.wordpress.com/

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