Loss of Another VWM Child

Sam is smiling as always, even at the dentist. Today a fellow VWM child, Isaiah, lost his battle with the disease. The loss of a child with the same disease as yours is always difficult. It is hard to explain, but it feels like losing a family member, even though you have never met. Maybe […]

Last Day of School!

Last day of school! Thanks to the teachers, aides, therapists, support staff, administrators, pupils and families at Glenville School, Sam had an amazing year. We were nervous about sending Sam to school full time and with his peers, afraid that his differences would set him apart in all the wrong ways; afraid that he would […]

Brain Bank Donation

So these arrived in the mail on Saturday. Following the Leukodystrophy Conference over the summer we made the decision to donate Sam’s brain for research after he passes away. The doctors and researchers at the conference stressed that this is one of the greatest gifts we can give, that the information they can get from […]

What is VWM?

Vanishing White Matter disease (VWM), also known as Childhood Ataxia with Central Nervous System Hypomyelination (CACH), is a neurological condition that destroys myelin, the brain’s white matter. In doing so, it permanently affects transmission of brain signals to the rest of the body. White matter is the tissue through which messages pass in the central nervous system. […]

Scared in 2016

Sam came home early today from school with a fever.  He had two low grade fevers last week, one yesterday and a higher one of 100.3 today.  The irony of this disease is that a fever causes the white matter in his brain to disappear and for Sam to lose motor control, while also making […]

2015 in Review

2015 has been a great year for team Sam.  We started off the New Year in Cancun – Sam loved playing in the huge waves and we all loved how wheelchair accessible Mexico was.  In February Sam got to ski for the very first time thanks to Vermont Adaptive, our little daredevil beat us all […]