Personal Stories and Inspiration

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.

Gabriella's Story The first story is Gabriella Low's story.
Jade'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.
Kristen's Story Gillian Deane has written a tributue to her daughter Kristen, which she hopes will give comfort to other parents.
Joyce's Story Joyce's story may give hope to those who are considering the difficult decision of whether to have scoliosis surgery.
Linda's Story Linda Ford is doing very well under the umbrella of Creative Abilities.
Kylie's Story 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.
Briar's Story 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.
Coreena's Story Rob has put together a webpage about her daughter Coreena.
Sarah's Story Sarah lives near Sydney, but visits New Zealand with her mother regularly. Last visit she was able to catch up with Gillian.
Bronwyn's Story Bronwyn will be 50 in October 2007. Her story is happy and inspiring.
Sarah's Story Lisa Holten has sent us a story about her daughter, Sarah.
Antoinette's Story 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.
Jane's Story Never give up and things do work out is the motto of Jane Chapman's family.
Chelsea's Story Sisters Don't Need Words – a story about Chelsea.
Paige's Story About Paige, written by her mother Cheryl Eales and her grandmother Lyn Ayre.
Jovannah's Story Welcome to Jovannah and her whānau.
Amy's Story The Scene newspaper has written a story about Amy.
Amy's Life 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.
Karly's Story Visit Karly's blog.
Christy's Story 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.

Kristen's Story

Kristen lives on in the hearts and minds of those who loved her because she had a magic way of enticing people to become part of her world which shrunk to her home as time went by but was full of love with family and friends who kept her company. We loved reading her moods by watching her beautiful blue eyes examining the innermost thoughts of our souls. Her smile made our day and her sense of humour was amazing.

When Kristen was about 21 months she started to drop her ice cream – she adored ice cream so we were rather worried. She lost her words she had been using and became very agitated and restless. Looking back I feel she was deeply depressed by the inability to use her hands. She had been a perfectionist putting things back in the cupboard in an orderly way if her Mother had been in a hurry.

We went on a search over the years to understand what may be happening to her. On that journey we travelled with a lot of people who suffer from bodies that no longer obey their wishes. When we went to live in Washington, a group of outstanding specialists studied her for several days. We were told she had a degenerative disorder of an unknown nature, but with the rate of progression she would probably live until she was ten.

The diagnosis changed our lives. We fought to get her to attend school, which she disliked, and we allowed her to walk for miles each day to keep her legs strong and to go to Art Galleries and museums, which she loved. Kristen’s favourite painting was Rembrandt’s Mill at the National Gallery in Washington – the day we left it had been taken away and she was furious. When we went back to her doctor three years later it was back on the wall and she laughed with delight.

Dr Rett said the girls’ eyes were so bright he was fascinated to know how much they knew. We look forward to testing eye pointing with computers one day.

Later as her seizures became worse we worried how she would react to not being able to go outside to enjoy nature, which had always meant so much to her. I remember when she saw the Franz Joseph Glacier she cried as she thought it was so beautiful. Somehow, she was so tired she found pleasure with being read to and watching TV and her favourite videos with the Three Tenors singing and Nureyev dancing. We learnt the human body has great powers of adjustment and waking up to see what is happening today makes one treasure each day as a gift.

After she died, Dr Beeby who was one of New Zealand’s great educationalists consoled us writing to say, “To love and be loved is the most important gift in life.”