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.
Sarah was born in New Zealand but now lives near Sydney with her parents and her brother Hamish. Sarah comes to New Zealand regularly with her mother Kathy to visit her grandmother. This year they were staying at Paraparaumu beach so we were able to catch up with each other.
Sarah is looking so well and healthy. She was able to walk until quite recently and can still use her legs if her hands are held on each side or if Kathy walks behind her to help her balance.
"Sarah is doing well, not a lot of change. She is enjoying her programme now that school has finished for her. It is at the local shops which means that we can walk down most days and the dog is happy about that too because he gets walked twice a day. It is only for three days a week, 18 hours in total, but I have noticed that her seizures are not as regular as they were. This could be because she is not so tired, as school was hectic with a long day 8am to 4pm (2 hours travelling in a taxi). There are three Rett girls where she is (the agency is called Lifestyle Solutions) and the possibilty of two more in a year. So we are educating people slowly about it !!"
We went for a lovely walk down to the Sunflower coffee shop on Marine Parade. The owners were so welcoming and ensured we had a lovely table to look at the view. The food was served on plates which looked like sunflowers, Sarah thought they were lovely and her Danish looked most inviting.
When Kathy heard Kathy Hunter was visiting New Zealand she was anxious to know if Kathy would be able to come to Sydney as so many people feel they know her through her book and her articles in the IRSA newsletter. Two emails later Kathy and Scott are going to include Sydney on their itinerary.
Joyce Morrison’s family knew Kathy and Sarah when they lived on the Kapiti coast. Kathy was interested to know that Joyce was able to stay in the school system for three more years than Sarah was in NSW. It is always interesting to know what ideas we can share with each other.
Sarah used to love riding horses but she has had less chance to continue this activity since she left NZ.