The Harley Jae Trust

General information

The Harley Jae Trust was established in 2006 as a trust fund for a little boy called Harley Jae Blanchard-Rafter. He was born with a very rare neurological condition that left him with profound and multiple learning difficulties, severe epilepsy and physically disabled.
Harley’s condition meant that he needed a high level of care which included medical care, therapies and equipment to give him the best possible opportunity to thrive and maintain a good quality of life. Maintaining good quality of life is an on-going battle for children with life limiting and life changing conditions and their families, so being to access services and equipment is vital.

The needed equipment such as ventilators, CPAP machines, suction machines, specialist beds, standing frames and wheelchairs are very expensive and the growing need for such equipment is continuing to put pressure on the budgets of local statutory bodies. This means that accessing equipment can sometimes be a battle for the families and professionals.

Harley and his family faced this challenge so for this reason, Harley’s Nanny, Teresa Blanchard set up a trust fund for him to try and raise money to buy a specialist wheelchair which he needed to help with his physical development.

The event was a success and it lead to growing popularity for the trust and lead the way for many more events to come. Eventually the trust had been able to provide Harley with all of the vital equipment he needs, a trip to Disneyland Paris and a trip to Florida to swim with Dolphins. Harley’s family were then able to use raised funds to make donations to services for Children with life limiting and life changing conditions such as Schools, Hospital Wards and Children’s Hospice’s.

On February 22nd 2013, Harley Jae sadly passed away at the age of 7. His condition was very complex and it was an amazing achievement for him to reach that tender age. This achievement was a result of a combination of the love he received and the outstanding health care he received. In Harley’s memory, the trust has now become a registered charity with an aim to be able to provide vital equipment for children with life limiting and life changing conditions.

Our first major project is to help the Paediatric Critical Care Unit at Nottingham's Children's Hospital, QMC by providing them with the equipment they need to be able to help long term patients have a more comfortable stay and also speed up there transition back home and into the community. This help will essentially help the unit free up bed spaces quicker which can subsequently save children's lives.

The Harley Jae Trust is commited to making sure that awareness is raised around these issues and that we promote communitry involvment in making sure that children with life limiting and life changing conditions are supported as much as possible.