Bowling

Sam had a bowling party this weekend, honestly we had no idea how or if this was going to work as we have not taken Sam bowling since he lost the ability to walk, but it was one of Sam’s best friends so he really wanted to be there. I anticipated pushing Sam in his […]

First Day of First Grade

Today was Sam’s first day of first grade. I spent much of the day sorting through paperwork that had been neglected all summer, impossible to get to with 3 kids at home. One form, the ‘Tell me about your child’ form that we get at the start of the new school year for each of […]

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. […]