Rett Syndrome is a neurological disorder that to date has occurred only
in girls. Development appears normal up to about six to eighteen months
of age. The child with Rett syndrome typically sits independently and
finger feeds at the expected time. Some children start the use of single
words and word combinations. Many children begin independent walking within
the normal range, while others show significant delay or inability to
walk independently. A period of stagnation or regression follows, during
which the child loses purposeful use of the hands, replacing it with repetitive
hand movements. Intellectual development appears to be severely delayed,
but true intelligence is difficult to measure. Other symptoms include
seizures, scoliosis and difficulty gaining weight. Many children are misdiagnosed
with autism or cerebral palsy.
International Rett Syndrome Association
The International Rett Syndrome Foundation (formerly the International Rett Syndrome Association) is a non profit group
devoted to supporting and encouraging medical research to determine the
cause and find a cure for Rett syndrome, to increase the public awareness
of Rett syndrome, and to provide informational and emotional support to
families of children with Rett syndrome. IRSF provides a case registry,
quarterly newsletters, annual conferences, research collaboration and
seed grants, patient referral and educational materials.
This cookbook is dedicated to Karen, Claire
and all of our beautiful girls worldwide.
I originally created this cookbook in 1995 as a fundraiser for the International Rett Syndrome Association (now the International Rett Syndrome Foundation). All 350 copies sold in three months, raising
$2000.00 for Rett Syndrome support and research. In 1996, I published
this on the Web in order to help raise awareness for Rett
Syndrome. I hope you'll take a moment to learn a little bit about
Rett Syndrome while you're looking through the collection of recipes from
friends and families around the country.