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.