Learn more about Harley Jae and how his legacy now lives one through our work.
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 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 the love of 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 therapy curriculum.
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 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.
Joe Rafter, Harley's Father
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See what we doRead the latest news about what we do at The Harley Jae Trust supporting families, our upcoming events and news from the healthcare sector.
11 May 2026
Harley’s 21st birthday was marked in a truly special way, with his family coming together at his bench to celebrate his life and the love that continues to surround his memory. The day was filled with cake, a glass of fizz, and their traditional balloon release — a gentle and meaningful tribute that has become part of how they honour him each year. It was a quiet but powerful moment of togethernes
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29 April 2026
We are proud to have recently funded baby massage training for the clinical support workers within PCCU at Queens Medical Centre Nottingham University Hospitals. This gentle, specialist approach is designed to support comfort, relaxation, and bonding for babies during their time on the unit, helping clinical teams provide even more compassionate care alongside their medical treatment. The training
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8 April 2026
This story 🥰 we were honoured to support the twins, a set of patients known to The Harley Jae Trust through their care at Queens Medical Centre Nottingham University Hospitals. Through our support, we were able to provide specialist pushchairs, giving them something truly special — the chance to experience the outdoors for the very first time in their lives, just in time for their first birthday.
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By supporting the Harley Jae Trust, you’re helping children with life-limiting conditions get the care and resources they need. Learn more about how you can contribute and make a real impact on their lives.
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