When our daughter Amy was born in February 1991 the diagnosis of Apert Syndrome was promptly given by our paediatrician. Unfortunately this diagnosis was not followed with parent-appropriate information. Copies of articles from dated medical text books sent us diving for our medical dictionary and the next few months were spent trying to decipher what the articles meant (wonderful bedtime reading as you soon fall asleep). Fortunately there was another family in Auckland who had a child with Apert Syndrome and once we made contact they provided us with an article that has continued to be a source of useful information.

In 1993, when three babies were born in the Wellington area within a four month period we knew something had to be done to support these families with appropriate information. The Apert Network was born over a weekend - by the end of which Howard was ready to throw our old IBM XT computer out the window as he had barely had a word from Ann all weekend!

When Amy was born we were told the incidence of Apert Syndrome was 1:160,000 (UK data), which works out at about one baby every three years. By the time Amy turned 5 years old, five more babies had been born in NZ with Apert Syndrome. We now use the US figure of 1:60,000.

Our Network consists of 12 families scattered throughout New Zealand. At the time of writing (December 1996) the ages of the affected children range from 9 months to 23 years, and the degree of impairment covers a wide range. We know there are other adults "out there" but we don't know where they are. Our contacts generally come through the craniofacial clinics and it seems the adults do not attend these clinics.

What we offer our families is peer support, and up-to-date and parent-appropriate information. Only someone who has "been there" can begin to understand what parents of new babies are going through. Where permission has been given we share the contact details of existing members, allowing them to contact others as and when they feel ready. In Auckland we now have three families affected by Apert Syndrome and we meet every few months. We send out newsletters every 3-4 months as time and energy permits, and keep in touch by phone or mail. With the advent of Teeter's Page and the Apert listserver we expect a few of our members will be going onto the Internet!

Craniofacial surgery is carried out in the main centres of Auckland, Wellington and Christchurch. Currently the surgery for our children is provided within the public health sector at no charge, however our first-ever coalition government has just been formed and we don't know what the future will hold. There is a basic "Handicapped Child's Allowance" we can receive, and other allowances depending on the financial state of the family and their distance from the centre where the surgery is carried out. We are also supported by early childhood intervention teams - physiotherapists, occupational and speech therapists, psychologists, etc - and we can apply for teacher aides to work with our children at pre-school and school.

If anyone wants to know more about us here in New Zealand, it would be great to hear from you.

December 1996