Personal Stories and Inspiration

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.

Gabriella's Story The first story is Gabriella Low's story.
Jade'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.
Kristen's Story Gillian Deane has written a tributue to her daughter Kristen, which she hopes will give comfort to other parents.
Joyce's Story Joyce's story may give hope to those who are considering the difficult decision of whether to have scoliosis surgery.
Linda's Story Linda Ford is doing very well under the umbrella of Creative Abilities.
Kylie's Story 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.
Briar's Story 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.
Coreena's Story Rob has put together a webpage about her daughter Coreena.
Sarah's Story Sarah lives near Sydney, but visits New Zealand with her mother regularly. Last visit she was able to catch up with Gillian.
Bronwyn's Story Bronwyn will be 50 in October 2007. Her story is happy and inspiring.
Sarah's Story Lisa Holten has sent us a story about her daughter, Sarah.
Antoinette's Story 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.
Jane's Story Never give up and things do work out is the motto of Jane Chapman's family.
Chelsea's Story Sisters Don't Need Words – a story about Chelsea.
Paige's Story About Paige, written by her mother Cheryl Eales and her grandmother Lyn Ayre.
Jovannah's Story Welcome to Jovannah and her whānau.
Amy's Story The Scene newspaper has written a story about Amy.
Amy's Life 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.
Karly's Story Visit Karly's blog.
Christy's Story 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.


In 1977 our third daughter was born and until approximately 11 1/2 yrs of age we didn't know she had Retts Syndrome when she was at Wilson Home Takapuna Auckland. A student doctor did a thesis on Rett Syndrome and it was then she was diagnosed. Dr Rett had only just announced to the medical world more recently at that time his discovery. Until then she was an unknown intellectual disability.

Today she lives in a community housing trust home under the umbrella of Creative Abilities on the North Shore and is now 29 years of age. She has all the classic symptoms, ringing of hands, teeth grinding, controlled epilepsy, curvature of the spine, scoliosis of the feet and screamed most of her life night and day until fairly recently when her whole diet was changed. She is the happiest she has ever been in her life and it is thanks to the wonderful care given to her currently where she lives in Ramsgate Tce Mairangi Bay Auckland. She is a lot more focused. Today you can hold her tightly and cuddle her where as she used to fight being held even for a cuddle. She is a beautiful daughter. On a rare occasion she has said mum. She can sit up on her own and lie back down again which I taught her to do for a long time and she achieved by age four.

She was 3 months when she stopped developing, four months stayed the same, five months started going backwards, ten months before anyone admitted anything wrong but I knew at three months. A mother instinctively knows. She is with her child 24 hrs a day and doctors should never say you are a fussy mother and that every child is different. There is no excuse. Of course it never changes the fact. Linda has given our family and I speak for myself, the greatest thrills of my life, just to see her content, smiling, happy is joy itself. I thought for years that Linda might not live past 30 years but she has a wonderful appetite and her soft food is specially prepared with suitable food types but now I think she could live a lot longer.

Linda loves music and floating in the water in the pool by herself, she never sinks. In the last year even we have seen a marked improvement in the way she focuses on people. As as child she would always respond to the male voice far quicker than to the female voice.

Diane Ford (Mum)