Dear Member

Worster-Drought Syndrome is a condition that affects us all. Like many others, we knew our son Christopher was in some way different from his peers but didn't know how or why. His older brother was very bright and did everything earlier than he should have and we thought Christopher was just a little slow off the mark. At each developmental assessment any concerns we had were brushed aside.

We then moved to back to Essex after spending four years in Surrey and finally found someone who listened to us. During the first routine visit by our health visitor, following the birth of our daughter, we mentioned our concerns over Christopher's lack of progress to her. Within six weeks we had an appointment arranged to see the community paediatrician, who then arranged an urgent appointment with the paediatric consultant at our local children's centre. Our consultant Dr Bridgeman mentioned numerous conditions, Worster-Drought Syndrome being one of them. HELP, we had never heard of this condition, the children's centre didn't have much info, where could we turn, who could we turn to. Then a lifeline appeared whilst searching the net for info, we came across the WDSSG website and communication with the national contact, Vanessa Butt was established. Following confirmation of the diagnosis we were put in touch with another family who had a child with WDS and who had some similar problems to Christopher. At last, a group of people who understood. We could chat to like minded families, meet other children with the same condition and generally find out more information. Our GP knew nothing about WDS, everything he now knows he learnt from us (nothing new there as we have since found out).

The point I am making is I am now in a position to offer something in return. The WDSSG was a huge help to me and my family. My first task was to register the group with the data protection act. Which is important when you are holding information on people on a computer. Then it was to apply for status as a registered charity.

The group had been asked to help raise money to fund further research into WDS. Brian Neville, Professor of Paediatric Neurology at Great Ormond Street Hospital, asked for our help in raising £150,000.00. Being a registered charity makes this sort of task easier. Companies and individuals are more likely to give to or sponsor the group if we have charity status. The paperwork was duly filled in, financial statements included and documents signed by the management committee. This is currently with the charities commission as I write.

Then came the Family Fun Day at London Zoo. The next thing I knew was, I was standing in front of a hundred plus parents talking about WDS. What a fantastic day, I must at this point thank Monique, Hayley and Vanessa for taking 10 months to organise the day. It was a huge success!

So here we are. The structure is in place to help raise the money needed to improve all our lives in relation to WDS. Fresh faces on the management committee with new ideas working alongside established members who have a wealth of knowledge. And an exiting future for all involved with the Worster-Drought Syndrome Support Group.

Gavin Leech - Chairman