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.
• Dr Phil Parmer shares his reflections on Rett syndrome as a grandparent.

Gillian Deane has written a profile of Kathy Hunter, president of the International Rett Syndrome Association.

History of Rett Syndrome in New Zealand

In response to questions about the history of Rett syndrome in New Zealand, Gillian has written a personal history of the beginnings of Rett Syndrome Association and Rett NZ.

Inspiration from our member families

We have also compiled some inspirational quotes from families living with Rett syndrome.

Articles

• In January 2001, the Dominion ran a story about NZ scientists studying "lost girls".
• On Monday 25 September, 60 Minutes on TV3 featured a story on Rett syndrome, with Alysha and Joyce and their families. Mike McRoberts presented the story and it was produced by Paula Penfold. You can watch the story by following this link.
• New Zealand Woman's Weekly featured a lovely story on Jacinta Hall, Our Silent Angel (pdf file; requires Acrobat Reader, which can be downloaded at this link), written by her parents Chenelle and Simon in their 10 October 2006 issue.