» David Axtell

David Axtell has been a Trustee of the Foundation since the Stratford conference in 1997. Initially drafted onto the conference committee, he then volunteered to join the inaugural Board of Trustees.

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.

Sadly Jade died in 2005. David stepped away from the board for some years but came back to it 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 plays in a local band.