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.
Gabriella Low is sixteen and she has been having 2 grams of colostrum and 30 mg of lacferon and one to two grams of fish oil a day. Gabriella has been having the colostrum since she was ten years old and the others more recently. Stephen her father, who is a mechanical engineer, thinks the fish oil helps the pain and her joints. Jan her Mother worked for aerospace industries and has a great interest in music. Vicky her sister is studying neuroscience at Otago University.
Before colostrum Gabriella had been in a wheel chair recovering from scoliosis surgery. One of Stephen’s friends was studying the effects of colostrum. It was a long term project where it took three months to make a real difference. Gabriella was on anti-biotics a lot of the time and slowly her muscles became stronger.
Gabriella's was 18 kilos at 10 and within six months she started to put on weight and in one year she was 30 kilos.
She is able to get out bed and pull herself up. She sits down, she walks and she loves her dogs too. She loves walking around the garden. We are almost certain she is saying “hello”, she looks with such understanding.
She loves going to school. She recognizes other people on the bus, and seems to understand when other people have problems too.
Gabriella loves music and singing. Last year she attended a singing and dancing class which is her favourite lesson of the day. Gabriella goes to Goldfields School in Paeroa. Nicky Van Rooyen also attends school with Gabriella.