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.
Never give up and things do work out is the motto of the Chapman Family. Tric Chapman is looking forward to the Rett Conference in Rotorua and Tric Chapman has always moulied up Jane’s food but she loves her very finely ground high fat high protein diet. She comes home every weekend on Friday night and goes back on Monday morning. What a difference being well made, Jane could always feed herself with a spoon for most of her life. She lost a lot of weight when people thought she could feed herself, Tric says it is important to stand your ground as a parent. Jane can still walk and she can get into the fridge to say what she likes. She loves hiking and tramping with holding her parent’s arms on the tracks. She did not walk until she was seven. Trevor was in Forestry in Jane went to a Child Potential unit in Rotorua with a box like trolley with wheels which could be adjusted. Like Metronomes Tric and Trevor said one two for many kilometers they were on their knees to get the motion going. Her elder brothers used to help her too. Not for long periods but frequent periods and she could see what she can do. She had a nibs chariot –the boys were reluctant to take her out in the wheelchair. Jane delivers five meals on wheels with a helper on Monday. She loves doing this so much.
Exercise is so important in keeping Jane fit and well, being one of four children she had to fit in with the family regime so it gave her the ability to give and take time.
She is amazing but when she is sick she is feels miserable Jane was about 10-11 months before Trica noted the changes, a Plunket nurse thought Tric was neglecting her, because her head was not growing at the same rate as it had been there was a burden taken off one’s shoulders.
Her seizures come about every six months now- the medication is holding the seizures but from time to time they break out again.
Ensure the wonderful dietary aid is helping keep Jane strong and makes her well and happy.