Our little boy, Harley Jae, was born with a rare neurological condition known as pontocerebellar hypoplasia type six. During his lifetime, he was one of only two children in the world with this condition. The trust was set up in 2006 to provide Harley with the vital medical equipment required to aid his development and make his life more comfortable. On February 22nd 2013, Harley Jae sadly passed away at the age of 7. In his memory we became a registered charity so we could provide equipment for children with life limiting and life changing conditions.