We have been collecting stories and photos from our member families and have a few to share with you.
Would you like to share your story with us? Please contact us.
The first story is Gabriella Low's story.
Nicki Stratford wrote a lovely piece about her sister Jade a few years ago and has agreed to let us include it here.
Gillian Deane has written a tributue to her daughter Kristen, which she hopes will give comfort to other parents.
Joyce's story may give hope to those who are considering the difficult decision of whether to have scoliosis surgery.
Linda Ford is doing very well under the umbrella of Creative Abilities.
Kylie's teacher Lynley has written a lovely story about her and her ability to communicate with a keyboard and Kylie herself has written a lovely piece about how she longed to speak.
Marlene Duff wants to share with us a beautiful poem written by her friend Freida Morris as a blessing for Briar that was read at her friends and whanau blessing ceremony.
Rob has put together a webpage about her daughter Coreena.
Sarah lives near Sydney, but visits New Zealand with her mother regularly. Last visit she was able to catch up with Gillian.
Bronwyn will be 50 in October 2007. Her story is happy and inspiring.
Lisa Holten has sent us a story about her daughter, Sarah.
Sarah has put together a very informative and affectionate PowerPoint presentation about Rett syndrome and her sister Antoinette (large PowerPoint presentation; download PowerPoint viewer at this link
Never give up and things do work out is the motto of Jane Chapman's family.
Sisters Don't Need Words – a story about Chelsea.
About Paige, written by her mother Cheryl Eales and her grandmother Lyn Ayre.
Welcome to Jovannah and her whānau.
The Scene newspaper has written a story about Amy.
The Scene have now written another story about Amy and her gift from Variety of a pony saddle.
A Grandparent's Reflection
Dr Phil Parmer shares his reflections on Rett syndrome as a grandparent.
Visit Karly's blog.
Lia has written Christy's story.
A proud father's view
“What is Rett Syndrome??” – a proud father's view
Kathy Hunter - President of the International Rett Syndrome Association
Gillian Deane has written a profile of Kathy Hunter, President of the International Rett Syndrome Association.
Bronwyn is going to be 50 years old on 25 October 2007. Bronwyn lives with her Mother Mary in Auckland and remains at home well and comfortable with her Mother.
Although she does not walk now she loves visitors and not long ago when her Mother was putting her to bed, she said the magic words which we would all love to hear “I love you Mum.”
Mary said these were the most special words she had ever heard. Mary is wondering if Bronwyn needs glasses now so she is reading Elaine Johansen’s paper called “THE RIGHT TO SEE.” We are putting it on the webpage for all to study.
When Bronwyn was young a neurologist examined her and said something every parent believes and some others find hard to discover “there is such intelligence locked behind those eyes.”
Prof Rett who first discovered Rett Syndrome used to say you only have to look into their eyes to know we are being watched. I had a friend who used to say, “Kristen looks into my soul.”
We are living at a time where we are on the edge of the discovery of how to unlock these secrets. Bronwyn’s long life is a tribute to her Mother Mary’s devotion and care and her own strength of mind, knowing each day in our life is precious no matter what demands it brings. Loved and being loved is the most special gift in the world.