Unit 3. 170-180 Carlton Road, Nottingham NG3 2BB

0115 784 3031 | info@theharleyjaetrust.org

Registered Charity No: 1160377

Our Story

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 events 30beds, 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.

Our Story

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 […]

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What We Do

The Harley Jae Trust has been created to help children with life limiting conditions and their families both in the community and in hospital settings. As we grow as an organisation we will be launching different appeals to help us achieve our goals. The Long Term Ventilation Team (LTV) at Nottingham’s Children’s Hospital Our first aim is […]

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About Harley

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 […]

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Support Us

The Harley Jae Trust relies on donations and sponsorship as one of our main funding streams. Without your help we would not be able to support children with life limiting and life changing conditions. Our hope is to be able to continue to support the children in Nottingham’s Paediatric Critical Care Unit (PCCU) for many […]

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