At the age of 2 1/2 our son Sam was diagnosed with a very rare, terminal brain disease called Vanishing White Matter disease (VWM). VWM causes the white matter in the brain to disappear over time, causing patients to lose motor control, but leaving them cognitively relatively intact. It is unusual in the fact that a minor bump on the head will cause a sudden loss of white matter and with it motor control. There are less than 250 cases worldwide, it is un-treatable and terminal. We decided very early on to give Sam the best life we could, filled with love, joy and experiences. Despite all his disabilities, Sam is joy personified.

Sam has been wheelchair bound for the last 5 Halloweens, so we always try to make his wheelchair part of his costume, and make sure that it is the coolest costume around. It is something that brings him (and us) so much joy and is the one day of the year it is better to be in a wheelchair than not. It is the one time of the year other kids look at him with envy, not pity, and that is priceless.

To read more about Sam see www.facebook.com/samvsvwm or on twitter and instagram @samvsvwm