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.

Variety the spice of Amy's life

By Ally Manning

You might remember features in Scene earlier this year about Leanne and Colin West’s beautiful daughter, Amy, who in October 2007 was diagnosed with Rett Syndrome. Until symptoms of the neurological disorder became evident, Amy was a completely normal, happy little girl who ate and slept well, loved her toys and prized her big sister Sarah.

It seemed, however, that Amy took a curious amount of time to walk and after eighteen months had passed, still no sign in of walking. The couple had been assured that Amy was fine, so thought she would start walking all in her own time. From there though, Amy began having difficulties with things such as drinking from her cup, playing and even eating. These were things that Amy had learnt and was completely capable of doing.

Gradually, her skills continued to deteriorate and Amy could walk only with the help of a small walking frame. With the diagnosis, her symptoms were very likely to get worse and unsure of whether changes in their daughter would be a gradual, rapid or even introduce new changes such as seizures (which are likely with this disorder), Colin and Leanne just had to take it as it came day by day and hope for the best. Then along came a miracle.

To Leanne and Colin’s astonishment, Amy started to walk. “I couldn’t believe my eyes. I just stood there basically with my mouth open, and then called to Colin; come and see your daughter, she’s walking! We both were completely astounded. We couldn’t believe it,” said an ecstatic Leanne. Now up and walking and seeming all the more happy, Amy and family have had more great news come their way.

Variety is a not for profit charity dedicated to helping New Zealand’s sick, disabled and disadvantaged children – helping them to strive to reach their full potential. Through a range of programmes, financial grants or through the provision of equipment or aids Variety encourages children to live fulfilled and enriched lives. They have done exactly this for Amy, by donating a specially imported ‘Inky Dinky’ Saddle to enable Amy to ride Chelsea, the family’s Welsh show pony, who she absolutely loves. Riding Chelsea is extremely beneficial for Amy’s muscle growth and physical development. Her six year-old sister Sarah has been riding the pony for four years and is a star in Amy’s eyes. Variety, which raises all its revenue through public donations and fundraising events, has given the Amy a chance for growth and to have a bit of fun, and Leanne and Colin are very appreciative!