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.
Jovannah was first assesed at the age of 17 months for Retts Syndrome. At that time her tests were negative but with new technology and more sophisticated techniques diagnosis of Retts Syndrome was confirmed in Jovannah at the age of two. A deletion of exons 3 and 4 of the MECP2 gene was identified which is a deletion reported in only two other Retts patients internationally. Jovannah is 9 years old, she is the youngest of 5, she has 3 much older brothers aged 29,28,23, and a sister aged 11. She is a aunty of 3 neices and 1 nephew. She attends a local kohanga reo twice a week which she absolutely enjoys, and spends a lot of time surrounded by her own little neices and cousins at home. As we are a bigger than norm whanau everyone shares with her care, we all are involved in making sure that we can give her the best we can in the best possible environment we can. Jovannah has taught us all not to take things for granted and made us closer as a whanau, she is our treasure ‘taonga’. “He kakano i ruia mai i Rangiatea”