» Ginny Penney

In January 1986 our second child Philip was born, he was diagnosed with CdlS in 1987 and our journey to find so many answers to questions began. I have been very fortunate to have met so many lovely people on this journey and have travelled around the world in our quest. Philip has participated in many research projects over the years and we have been involved with health and social workers in making the process hopefully easier for new families. It has been wonderful seeing all the new developments and great steps forward that have been achieved in the past 30 years for this very rare syndrome.

We attended our first meeting at a hotel in Weston Super mare in 1987 and along with 5 other families shared our very limited knowledge. This of course was the forerunner to the conferences that we know today, made possible by the dedication of the people who work so tirelessly for the foundation. Our daughter Joanne was only 5 years old and over the years has made many friends with the other siblings who attended the conferences, picnics and fundraising events. I feel that the Foundation is a ‘family’ in the true sense and by coming together and sharing experiences we can make a real difference not only to the person with CdlS but also for the other family members.

When Joanne was pregnant with our beautiful grandson Liam (8 years ago), we had the support of the doctors at Great Ormond Street, who helped with fears of the gene being carried etc. The progression of medical information has been fantastic over the years.

Unfortunately Philip could not continue to live with us due to his challenging behaviour and he went into a residential home setting when he was nearly 22 years old, this was a very difficult time for us as a family and again the Foundation supported us. My husband Steve was a founder member of the Board of Trustees and when he passed away in March 2014 I was very grateful for the support given to me and my family by our many friends.

I have joined the Trustees with the hope that I bring with me a wealth of information not only in years of caring and campaigning for and on behalf of people with CdlS. I have previously been employed in the Education and Voluntary sectors in Essex and have assisted parents at Tribunals with Educational and Benefit Appeals.