Sam vs. VWM

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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 brainā€™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 Samā€™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.

09/13/2026

Sam's summer concert series resumed last weekend with another of his all time favs,

and then yesterday, Sam turned 16!!! The last 16 years have been an adventure to say the least. Sam has opened up a whol...
09/01/2026

and then yesterday, Sam turned 16!!!

The last 16 years have been an adventure to say the least. Sam has opened up a whole new world for us that most people never experience, all of which has led us here. 16. An age we could not be happier to see.

It was a great birthday for Sam, Chelsea won, then his friends came over to hang out in the afternoon. Sam's best friend's mom even made a video for him with all of the friends that have seen him through the last 16 years, and mean more to Sam than anything else in the world. Friends who help you blow out the candles when you can't do it by yourself.

Thank you to everyone for all the love and support over the last 16 years!

First day of 10th grade! After nearly 4 months at home Sam is so happy to be back at school! Mom is also pretty happy Sa...
08/29/2026

First day of 10th grade! After nearly 4 months at home Sam is so happy to be back at school! Mom is also pretty happy Sam is back at school šŸ¤£

Won a few friends and ate all the pizza fritta at St. Roch's tonight!
08/15/2026

Won a few friends and ate all the pizza fritta at St. Roch's tonight!

Protesting being forced to watch Liverpool Football Club at Yankee Stadium last night, but he was pretty excited about m...
07/30/2026

Protesting being forced to watch Liverpool Football Club at Yankee Stadium last night, but he was pretty excited about making it onto the jumbotron....

Perfect day for a ball game! New York Mets
07/26/2026

Perfect day for a ball game! New York Mets

Also managed to squeeze in Benson Boone in between Bon Jovi and Niall Horan. Benson always puts on a great show!
07/24/2026

Also managed to squeeze in Benson Boone in between Bon Jovi and Niall Horan. Benson always puts on a great show!

Had to wait an extra day in Hershey (concert was rescheduled due to weather) , but Sam is so excited to see his all time...
07/19/2026

Had to wait an extra day in Hershey (concert was rescheduled due to weather) , but Sam is so excited to see his all time favorite tonight, Niall Horan

07/19/2026

Sam's summer concert series started a few weeks ago with Bon Jovi Madison Square Garden

He LOVES this song and couldn't wait to hear it live!

Go In-ger-land!!!
07/15/2026

Go In-ger-land!!!

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1 Tennis Pl
Forest Hills, NY
11375

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