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 underlying 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.
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.
Our family made sure he had a good quality of life and was very lucky to be surrounded with love from so many people. He went to Rosewood School where he could interact with other children with similar needs to his own and where they had a very specialist sensory based and therapy curriculum.
The Harley Jae Trust was set up in 2006 by Harley’s Grandmother Teresa, so that Harley would have the equipment he would need as he grew to help aid his development and make his life more comfortable.
Special needs equipment is very expensive and our family was grateful to those who had participated in various fundraising events and who had kindly donated. Some of the items purchased by the trust included a specialist profiling bed that was bright and colourful which Harley loved.
We created a sensory room in our house so Harley had equipment such as a bubble tube, fibre optic lights and a projector. The trust also purchased a number of wheelchairs and supportive seating chairs so that Harley could be positioned correctly and comfortably.
The trust has donated funds and equipment to Naomi House Children’s Hospice, Rosewood School, Northbrook Ward at Winchester Hospital, Paediatric Intensive Care Unit and High Dependancy Unit at Southampton General Hospital so that other children also benefited from our events, and services that were huge part of Harley’s life.
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.
His bravery is what inspired so many people to do so much to support his life through supporting 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.