» David Axtell

David Axtell has been a Trustee of the Foundation, albeit with a 5 year break, since 1997.

David has two daughters; Dayna and Jade who had CdLS. “It was sheer luck that Jade was correctly diagnosed within a week of birth.

“A regional geneticist happened to be in town and correctly identified the syndrome,” he says.

In an effort to find out more about a syndrome even the geneticist knew little about, he got in touch with the Foundation. After being drafted onto the organising committee for the first International CdLS Conference held in Europe, he was asked to be a trustee by then Chairman Alan Peaford. He recalls "Alan asked me at the conference, so I asked what it entails and he just said it's like being a company director. That was it. He told me I'd been elected (in absentia) later on!"

Sadly Jade died in 2005. David stepped away from the board for some years but came back to it in 2010 and is now Chairman.

"Once I had really got over Jade's passing, I realised how much I missed being part of the CdLS global family. I came along to my first meeting in nearly 5 years - not without a little trepidation - and was greeted so warmly, it took no persuasion at all to get me back into the fold."

"Jade's death was the result of complications arising from CdLS. I cannot stress enough the importance of ensuring doctors listen to parents/carers. All too often, we have a greater depth of knowledge about CdLS than the professionals. I also want to emphasise that Jade's early passing was not an inevitable outcome of CdLS but shows that it is vital to keep on top of aspects of the condition."

David lives on Mersea Island in Essex where he works as a graphic designer and postman. He plays guitar at local gigs occasionally.