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.

Whatever happens, we'll love her

By Caron

Colin and Leanne West are like any other normal couple in our community. They got married, planned their family and focussed on continuing to grow their successful panel beating business.

Sarah, the couple’s first daughter, was born six years ago and is a delightful little girl who loves ponies, netball, playing with her friends and as I found out recently, is quite the little artist! She couldn’t wait when told by her parents two years ago, that a little brother or sister was on the way. Leanne was pregnant and after a very normal pregnancy with no complications, she gave birth to their second daughter, Amy, by Caesarean Section. Amy’s first year like Sarah’s had been, was full of celebration as she reached each milestone and began to develop her own little personality. Sure she was a little behind Sarah when it came to crawling and taking her first wobbly steps, but assured by Plunket and her family doctor that everything was fine, Colin and Leanne naturally thought nothing more of it.

When Amy was 18 months old and still not walking, Leanne took her to a Child Development Specialist ‘just to be sure’ and again, was assured that children develop all in their own time, so don’t worry! And why should she? Amy was an absolute treasure. She slept and ate well, enjoyed her toys and especially playing with her big sister and as Leanne tells me, had obviously inherited her dad’s lovely placid nature. However around Christmas time, Amy was out of sorts and this time, Leanne was worried.

Amy seemed to have trouble doing things she always did - things like drinking from her cup, or picking up and playing with her toys. She seemed to have lost interest, and some of her ability, to do these things and even seemed to have trouble eating and walking. “The demise in her wellbeing was so quick” says Leanne, “I just had no idea what was wrong with her. My gorgeous little girl just wasn’t herself and I kept thinking what on earth have I missed? In March we took her back to the Child Development Specialist and they too, couldn’t believe this was the same little girl they had met just last October.” This day was to change the life of the West family for ever.

Amy was diagnosed with Rett Syndrome, a neurological disorder seen almost exclusively in females. The symptoms are similar to those of autism and cerebral palsy and can often be misdiagnosed. Interestingly, symptoms do not occur until between six and 18 months of age and exactly as happened with Amy; start with a period of stagnation or regression in development with a loss of motor control and communication skills. A slowing in head growth is normal and wringing of hands, clapping or hand mouthing is also very common with other symptoms arising with age.

It is important to realise however, that girls and women affected by Rett Syndrome may have difficulty communicating verbally and physically, but still experience a full range of emotions and understand more than they can express. “Amy has an engaging personality” says Leanne, “and everyone who knows her, just loves her. She is surprisingly responsive when doing things she loves, particularly swimming and at times, albeit in her own time, has proved she can follow simple instructions. We are very, very lucky as a family to have Amy involved with wonderful people that care about her and her development, from those at Kids Corner to her personal Teacher Aid and of course her extended family. We have no idea what the future holds for Amy but have been in touch with Rett Support groups which have been both educational and supportive and are trying to learn all we can to help her. We refuse to accept that she can’t live a relatively normal, happy life and ‘can’t’ is not part of our vocabulary. Amy has taught us to re-evaluate what is important and although obviously we have some trying times, family time, acceptance and awareness, is crucial.”

As Amy gets older, there is no doubt more changes will occur especially given that she so far, has been the youngest in New Zealand to be diagnosed with the condition. These changes may be gradual or they may be rapid, each case is individual and the chance of seizures is also quite likely. Colin and Leanne have to face these changes on a ‘as happens’ basis but are committed to doing all they can to at least stabilise, if not improve her personal well being. “Sarah is a wonderful influence on Amy” says Leanne, “even at just six years old. She is very protective and patient and we try hard to maintain a normal, active family life so it doesn’t affect her too much. She is very understanding of her sister’s condition and needs, and loves to help where she can.”

If you happen to see Amy out and about with her mum and/or Teacher Aid, it is important that it is not pity you are offering. “She has trouble sometimes, and even walking along with her frame can be a mammoth effort for her” says Leanne, “but she responds incredibly to encouragement and with such a lovely temperament, adores social contact. Already she has taught us so much as far as what is important, and showing patience and kindness. If nothing else, I would say our little angel certainly has the ability to teach people how to be nice. Whatever happens from here on in, we’ll love her and be right there with her.”