This site is a tribute to our beloved William, who passed away very peacefully on 20th August 2023, with mum and dad holding his hands. William was only 22 years old but had lived a fulfilling life despite his diagnosis with Niemann-Pick disease type C (NPC) at just 9 months old. Before his condition robbed him of the ability, William habitually wore a huge smile on his face and laughed the most infectious, belly laugh. He loved having his photo taken and we have thousands to remember him by and remind us of happy shared moments. William was a hugger and we have so many photos of him hugging people, especially his sister, Rebecca. William loved animals and they seemed to be naturally drawn to him.

The Niemann-Pick Research Foundation was established in 2011 by William's parents to fund research into NPC, with the dearest wish being that progress would be made to help William's generation. Through various sponsored events, golf days, Balls and other fundraising activities the charity raised over £875k and funded research at the University of Oxford, Cardiff University, the University of Sussex, De Montford University and UCL. Although there was undoubted progress achieved through these grants, the goal of a successful treatment for William's generation remains elusive.

The charity will close following William's passing and the remaining funds will be used to provide bursaries and awards to young scientists looking to enter the field of research into NPC. These awards will be made in William's name and will be a lasting legacy from his short life and personal battle with NPC.

William touched many peoples lives during his 22 years. We would like to express our sincere thanks to all that helped him, helped us and helped the charity.

"Alone we can do so little; together we can do so much" (Helen Keller).

William's funeral will be a celebration of his life and everyone who was touched by William's life is welcome, indeed encouraged to attend. William was a loud, vivacious young man; the most fitting tribute would be a loud and full church. There may be tears but there will also be smiles and hopefully a few laughs as we recall happy memories.   

David, Sue and Rebecca