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.

Kylie's Page

Fascilitated communication opened up a whole new field of confidence and widened Kylie’s life in a dramatic way. One of Kylie’s teachers wrote a thesis on Kylie’s response to her newfound ability to communicate through the keyboard. There is a lovely page she wrote about how she longed to speak. We have included this in Kylie’s story.

Kylie’s mother Debbie said Kylie did more than speak with her eyes; she communicated on the computer. I thought the association was more than aware of this. Kylie had a thesis done on her at the Otago University and in it are well documented and proven thoughts that she had. She attended school, she took part in all aspects of school i.e. maths, English etc.

Kylie’s teacher Lynley has written a lovely story about her and her mother Debbie has sent some beautiful photos.

The concept keyboard can be programmed to recognize anything from numbers to colours to letters to words in Māori. The board is divided up into squares. You decide how many squares you need for each letter etc. Then assign all these squares to the letter etc. You then use a piece of A3 paper and transfer the information to it. At the start the squares are best to be a decent size with the letter etc centred on it or even just a colour. Kylie started off with a book about clowns that had different coloured noses, hats etc. I would read the story, then ask questions about it. Like the clown with green pants had a what coloured hat? She would touch purple. I realized quickly that this was all too babyish for her. She had taught herself to read. So we progressed onto spelling the colours. The next day it was work in the class and see what you know. And boy did she know heaps. It was very tiring at the start, all this concentration that was necessary but she just wanted to get everything out. Once the gate was open there was no stopping her. Now all kids are different and you wouldn't expect the same result necessarily with other little girls but nothing ventured nothing gained.

Anything I can do to help just contact me.

Sadly Kylie found rest from her busy life ten years ago, however, her spirit and achievements are remembered by all those who loved her.

what i would like to do most in the world is speak. to be able to talk would be marvellous.

i would be able to communicate much better with people. i would like to say i love you to my mum and my dad and my brothers.

my biggest problem is people who think i am dumb. i have hidden talents just ask mrs marwick.

i wish i could speak.

By Kylie Trevathan - 11yrs