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.

Christy's Story

Christy was 20 months old when her 3 week old sister Danni was seen at home by a Plunket nurse new to us and Christy immediately caught her eye.

Christy still very much looked like a baby.

She was tiny crawling around the floor and able to feed herself with her fingers but did not have the pincer grip and the only way she was able to give herself a drink was with a baby's bottle.

She didn't talk, pull herself up, walk or roll herself over when placed on her back or front.

She was just starting to scream for most of the day, pacified only if I held her in the rocking chair and had music playing.

I put it down to her frequent, on-going ear infections.

The Plunket nurse sent us to get Christy developmentally tested with disastrous outcomes.

It was like a very dark fairy-tale that I had read once as a child ; my perfect baby had been taken in the night and a "changeling" left in her place.

The GP told me not to worry as his brother was 4years old before he spoke "but, look at him now, he's a lawyer !"

We were sent to see a paediatrician and, it seemed, numerous other specialists so Christy, Danni and I spent very little time at home in the next two years.

None of the specialists gave me any indication of how profoundly intellectually affected that they thought that Christy actually was, although, with hind-sight, I realise that, from questions and statements made by the paediatrician and ENT specialist, that they knew then, but at that stage, I thought that I had to put lots of time and effort into helping Christy get ahead, developmentally-wise, as much as possible so that she would lag behind her class-mates as little as possible when she started school.

To that end we began going to Early Intervention, one of two in Christchurch. It did not take me long to realise that we were not making progress and I was becoming quite dis-spirited with it and all the appointments and waiting rooms that we virtually lived in.

As I learned later, another Mum who was at Early Intervention with her daughter, Antoinette, suggested to the physio that Christy could have Rett Syndrome. The physio then contacted the paediatrician.

In the week of Christy's 3rd birthday I was given Christy's probable diagnosis - Rett Syndrome.

It was devastating news but, in a way, it was a relief as, after doing a lot of research, I felt strongly that I no longer had to allow the Early Intervention therapists to do things with Christy that scared (actually, terrified her) and distressed her and have the therapists telling me to "persevere" and "talk more baby talk" and "don't worry if she cries, it's for the best".

A month later their Dad left and the three of us were on our own as his extended family is in USA and mine is in Australia and Holland.

We began a new plan of action and switched to the other Early Intervention where we just had fun within the therapy rather than forcing Christy to do things that she obviously could not and would never do.

Danni, who was then a year old and starting to feel left out, was included too and there was an emphasis on connecting with parents in similar circumstances.

We all looked forward to being there instead of rather dreading it as we had the first Early Intervention.

When Danni was at the crawling stage, she would crawl after Christy, who crawled around the house on all fours, often resting on her forearms but they soon switched around as Danni became more able.

Danni and I are not early morning people so, Christy, who is, would, somewhere around 5.30- 6am lower herself backwards out of her low bed and crawl off down the hall to the lounge/dining room where there were toys put out for her around the edges of the room and she would play until I got up around 6.30.

Sometimes I would have to go looking for her as she would have crept into a little corner out of immediate sight with a toy or picking at the carpet.

Christy continued to crawl all around the house until I agreed that she should have tendon release surgery at five years of age which involved her being in a cast on each foot (at separate times) for 6weeks after the surgery.

After removal of the casts she appeared to have forgotten how to do distance crawling and she never re-learnt it but was still able to crawl around a large room and enjoyed this.

Her feet soon reverted to their original positions despite frequent physiotherapy and it was as though she had never had the surgery except for the scars.

She never walked as she never had any sense of balance but, when supported to move forward, would move her feet in a stepping motion and, for her early years this was done by someone holding her from behind.

As she grew, the school organised a standing frame for her as no suitable walking frame could be found.

She was fitted for her first wheelchair at four and a half years (previous to that we had had an over-sized baby buggy) and we were mobile!

Instead of spending all our time in waiting rooms we were out and about for long walks, picnics, animal parks, shopping trips, Christchurch's holiday events etc.

The wheelchair also made a huge difference to the way Christy was perceived.

Having lunch at McDonalds, we would get disapproving looks from other patrons as Christy blew her "raspberries" and made a ring of hamburger around her high chair (she was tiny and could use the high chairs up until nearly five years of age) but, with the wheelchair in evidence, they seemed to accept that there was a reason for her behaviour other than bad manners.

At six and a half she started having seizures and these continued to be a huge problem until she was taken off Tegretol ,left on Epilim and put on Lamotrigine at 9yrs of age.

This changed her life and she became much happier and content within herself.

She attended a special needs school, starting at 4 1/2yrs as their first kindergarten student.

The teachers there knew her so well and were able to fit in outings, rest periods, provide equipment and adapt her program to her needs in a way that our local primary schools could not have.

We went swimming twice per week, horse-riding, and walking on the beach with her in her "beach buggy".

She loved her music videos and her television, being on a swing and being read and sung to.

Because of her developing scoliosis, she was becoming less mobile and gradually got to the point where she was "swimming" in a circle on the carpet.

She began having chest infections and pneumonia and her scoliosis reached a degree to which it was decided that surgery was necessary.

This happened when she was 12 years old in Dunedin hospital. She coped with it very well and this decreased the number of chest infections and she was soon back to her usual self except that she no longer moved when she was put onto the floor and she was unable to go horse-riding as the rod in her back seemed to make it uncomfortable for her to ride.

It was also more difficult for her to get comfortable in her wheelchair no matter what was done to modify it and subsequent models.

Christy had good health for some years after the rod insertion but then over a period of 18 - 24months, started to have some difficulties with her swallowing and was losing weight slowly.

Danni and I bought Christy lots of her favourite chocolate things to try to supplement her calorie intake but her swallowing worsened and ,just before Christmas 2008, the decision was made that she should be nil by mouth and a PEG was inserted.

I thought that she would be upset about not being able to eat as it was her biggest enjoyment in life but she seemed to know that this was the only option and seemed to take it philosophically.

There have been difficulties with the feeding regime with her not tolerating it or being unwell and not being able to retain it so she has lost more weight and it is a constant battle now to get her weight stabilised.

In her 20th year a new day placement program was set up by the beach 5 minutes away from us and the residential care house and we jumped at the opportunity as she had always had to travel some kms for her schooling.

Christy has now settled in there and is part of that "family" too.

She still manages to "walk" in her Mey Walker guided by a hand or she can manoeuvre backwards on her own.

We still go swimming but only if it is warm enough as she tends to have seizures if it is cold and she tolerates about 15 minutes at a time in the water even though it is warm.

Christy has become more fragile in the last 18mths, unable to tolerate more than short outings as she is too uncomfortable in her chair and tires easily so we tend to do more local outings or visit at the residential care house where she is now full-time with very caring and dedicated carers only 5 minutes away from Danni and I.

We had her 21st birthday party in November with lots of friends and laughter, balloons, presents, Shad the entertainer, a big cake and a BBQ.

It was a landmark as we had gone through a lot together with Christy to get to that point and we felt that we had a much to celebrate that day.

Christy remains an important and precious part of our family and we treasure every moment with her.

She has the ability, with her knowing eyes and beautiful smile to make me and everyone around her feel happy no matter what else is going on.