Wolf Hirschhorn Syndrome

You will not be alone if you are thinking now that you have never heard of Wolf Hirschhorn Syndrome. I hadn’t either until that is, my son James was diagnosed with WHS at the age of two and a half years old.

The incidence in 1998 when James was diagnosed was around one in 50,000 births and it remains the same now some 26 years later. We were given very little information by the geneticists at the time of James’ diagnosis and yes, I’m so old that we didn’t have the internet then to go home and Google.

Among the information I did receive was a contact number for a lady called Chris Hilder who having a son with the same syndrome herself had started a support group, not an easy task when communication was purely via the telephone and newsletters. And so, with one phone call to Chris, so began my association with the National Wolf Hirschhorn Support group.

Last month I attended the bi annual Wolf Hirschhorn Conference.

It is an event that takes priority on my calendar. It has grown from a small group of families meeting together to a well-established and professionally organised conference with approximately 50 families in attendance this year.

This year was our twelfth conference. The first we attended was in 1999. I remember that first time, such a mixture of emotions. Excitement at finally meeting families who had a child with the same condition as James, searching for information and answers that may help us to know how to care for him in the best possible way but also the feeling of trepidation, meeting other children like James and coming to terms with the reality of how his future may be.

We were of course welcomed with open arms.

We formed friendships that have continued for 25 years. At each meeting we attend we meet up not only with old friends but we meet knew families who are following in our path. We share a unique bond and in those two days we share so much and yes now we also have the advantage of social media and Facebook groups that means we can maintain that contact more frequently.

Sadly, Chris Hilder the founder of the support group passed away in 2006. The group had grown considerably by then but not to the extent it is today. This year just 6 weeks before the National meeting Chris’ son who had WHS also passed away. He was 46 years old. I was very privileged to have met both Chris, her son and also her two daughters. In those early, scary, uncertain days it was Chris who offered us words of comfort and reassurance as she did to so many other families.