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.

"What is Rett Syndrome??" - A Dad's View

“How do you spell it”, what is Rett an abbreviation for?”, “I think it’s short for Turrets”. “We need a bigger book”. “You have to tell us about it”.

It’s 1.30am and I sit in a paediatric ward, in Tauranga New Zealand. It’s quiet now and the only voices are of the doctors and nurses asking those questions that have become all too familiar.

I keep telling myself we are not a third world country, but this disease, one which has taken over my life and the life of my wife and our little girl, is something of a mystery to these people. That disease is called Rett’s.

In their defence, it was a mystery to us too. Something we had never heard of. Something you and I don’t really want to hear of. It sneaks up on you, robbing our girls of their every potential, robbing us parents of dreams and replacing them with nightmares.

Once the frustration, fear and general bewilderment subside we are left with some of the most courageous children you are likely to meet. I don’t know a lot about this disease, but what I do know is that education is needed urgently, both in the public and health sectors of every day life.

In two years I have watched professionals at Starship confidently quote things like Global Developmental Delay, Autism and so on. Today I have seen every person from ambulance driver to pediatrician ask us, what is Retts, how do you spell it.

Aren’t we meant to be getting answers from them? In compiling this submission I have for weeks thought about what it would benefit, if successful. Today I found that answer, it is simply education. The more people who learn about this disease, the more chance we have of securing further funding in the future.

I revived my four year old daughter today. I know in years to come, I will have to possibly do this again… if I’m lucky. Help us find a cure for this monster by spreading our word of a daily struggle by the world’s silent angels.

Signed – A proud father
6 March 2006