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.
Joyce's Story of Scoliosis Surgery
Joyce Morrison and her family live in sunny Gisborne. They used to live in Wellington but her father Val felt the pull of his Ngati Porou family back on the East Coast. Joyce was named after her Auntie Joyce who lives in Europe.
Joyce loves company and has always enjoyed the family gatherings and going to school. As she got older her spine was noticeably favouring a bend to her right side. She always had some respiratory problem: chest infection, pneumonia, a cold or flu. Her parents decided from reading the literature and discussions with surgeons that it was sensible to have an operation to keep her walking and strong before her movement became inhibited, and also to improve her health.
Such decisions are difficult and take a lot of thought and planning, especially as the operation was to be at Starship Children’s Hospital in Auckland. However, the family were well looked after at Ronald McDonald House and were able to be on guard with Joyce, explaining her needs around the clock.
We were all so proud of Joyce, she was so brave and coped very well with the operation and the care involved in getting her back to normal again and being able to sit and stand more easily.
She was 12 years old at the time of her operation in August 1998. She has grown from strength to strength and has had very little respiratory problems since. Her parents believe it was the right decision.
Joyce was so full of the joy of life she made people around her happy. She was on the 1992–3 IHC advertisement for the national appeal.
In January 2007 Joyce will be 21 years old. Her surgery has kept her strong and her muscles working well. She sits up well on the floor and walks with assistance. At school she also uses a walking frame at different times of the day, to encourage some independence and keep her muscles working Exercise is very important for those who have Rett syndrome.