The story of an inspirational boy named Harley

Our little boy Harley Jae suffered from a rare neurological condition known as pontocerebellar hypoplasia type six. During his life he was one of only two children in the world with this condition. This diagnosis left Harley with severe uncontrolled epilepsy, global developmental delay and learning difficulties.

When he was four months old, he was rushed into hospital after having a prolonged seizure. Following intensive investigations, we were told that Harley had infantile spasms, but the cause for his condition has not yet been discovered. As a result of Harley’s condition he had many problems that affected his health and learning. He was registered blind and was gasostromy fed. He was unable to walk or talk, although he communicated with us in his own very special way.

His bravery is what inspired so many people to do so much to support the Harley Jae Trust. In Harley’s memory, The Harley Jae Trust will continue as a registered charity to help and support children to access the equipment they need which contributes towards their quality of life.

Joe Rafter, Harley's Father