The Harley Jae Trust was established in 2006 as a trust fund for our little boy, 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.
You can find out more about Harley on our ‘About Harley’ Page.
Harley’s condition meant that he needed high level medical care, therapy treatment and equipment to give him the best possible opportunity to thrive and maintain a good quality of life, which is an on-going battle for children with life limiting and life changing conditions and their families.
Having access to services and equipment is vital.
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.
On February 22nd 2013, Harley Jae sadly passed away at the age of 7.
Reaching this age was a result of a combination of things including the love he was surrounded by, the outstanding health care he received, and also the equipment he was lucky enough to access.
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.