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.
Harley's Nanny Teresa created the trust initially to raise money for equipment that he needed that wasn't available from our local authority. This meant he had the best quality of life and we will always be so grateful to our friends and family for their generous support.
​We were able to buy advanced specialist equipment such as wheelchairs and beds. We even had a trip to Florida to swim with Dolphins and to see Mickey Mouse. These are memories that our family will treasure forever.
After Harley's passing his Father Joseph registered the trust as a charity and 'The Harley Jae Trust' based in Nottingham has jumped from success to success.
Harley's Mother Lucy is now heading this separate charity 'Harley Jae South' to focus on helping individuals, hospitals and hospices in London and the South of England.
​Both charities have similar objectives which means we can now help even more children in honour of our brave boy.
Harley Jae South would like to thank friends, family and members of the community who have participated in some truly remarkable fundraising events and shown their generous and continuing support.
What we do to help
​We aim to raise awareness and provide vital equipment for children with life limiting and life changing conditions. The charity also makes donations to services such as schools, hospital wards and children’s hospice’s.
​Families can also apply to the charity directly for 'wishes' to be granted.
