Our little boy Harley Jae was diagnosed with a rare neurological condition known as
Ponto Cerebellar Hypoplasia type 6.
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.
As a result of Harley’s condition he had many problems that affected his health and learning. He was registered blind and was gastrostomy fed. He was unable to walk or talk, although he communicated with us in his own very special way.
Despite all of his complex health and social needs Harley Jae was such a happy and contented little boy. He loved nothing more than a cuddle and he was always smiling.
He had the best quality of life and he was surrounded with the love of so many people.
On February 22nd 2013 Harley sadly passed away after contracting a severe case of pneumonia. He had battled through frequent periods of illness during his seven years and surpassed the doctor’s expectations time and time again.
In Harley's memory and to honour his bravery Harley Jae South will continue to help and support children with life limiting conditions and their families.