Rebecca Hulst, aged five,
in her school uniform
swimming with her dad.
|Hello and welcome, this site is about girls and women with Rett Syndrome leading full and exciting lives.
It's what I needed when Rebecca, my daughter, was diagnosed with Rett Syndrome.
In 1988 our doctor told us that Rebecca had Rett Syndrome, and handed us a medical
It featured a picture of a young woman, naked except for an over-sized nappy, slumped
in a bean-bag, with tubes in her arm and nose.
We couldn't understand most of the medical terms, but the article was clear -
it listed all the things Rebecca would never do.
This article was followed by many more all in the same vein.
They were devastating and, for a time, we were immobilised by them.
What we really needed were some positive role models - real life antidotes for the
relentlessly negative medical press.
Eventually we pulled ourselves together, and started to offer Rebecca the same
opportunities as other girls her age. Rebecca went on to live a full and interesting life
until she died in 1993.
I've put this web site together so that, hopefully, no-one else will have to lose the
precious time we wasted, because they have incomplete information.