Derek with son Neil.

“I’ve been coming to conferences and social gatherings since Birmingham in 1992,” said Derek, who joined the Board of Trustees in May. “I find it really valuable to talk to other parents about the Syndrome as they always have information to share – and being with them helps reduce the sense of isolation.”

It was at the Birmingham conference that Derek’s son, Neil, then aged 5, was firmly diagnosed with CdLS – which came as a great relief to Derek and his wife, Monica.

Now 16, Neil is mildly affected physically, but he has severe learning disabilities.

“Neil has no speech at all,” said Derek, “and a very limited ability to communicate as he cannot sign. The Foundation gatherings are a great opportunity for Neil to go to social events where he is acceptable.”

An actuary, Derek lives in Dublin. He and Monica have two other children, Hazel, 22, and Leo, 17. Their first son, Ross, died suddenly in 1985 aged 22 months due to septicaemia.

Derek was asked to become a trustee at the Weston-Super-Mare meeting – but it didn’t take a lot of persuasion.

“Weston-Super-Mare was a good experience for us and we intend to come to as many family meetings as we can,” said Derek.

“The trustees’ meetings usually co-incide, so it won’t be much trouble to attend. We have learned a lot and found support through the Foundation and I am happy to do what I can to help by becoming a trustee.”