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.

About Paige

Paige Yvette Eales is now 5 and attending a special needs school, which she started in April this year 2007. She is one of the most beautiful girls you will ever meet, big bubbly eyes and the most beautiful smile.

From the start Paige showed very slightly ‘different’ behaviour to other babies; in her sleeping habits, eye movement and small compulsive actions. At the time we didn’t make too much of it, the significance is more noticeable with hindsight and the knowledge we now have.

She was a very smiley placid baby, breast fed until she weaned herself at 8 months. She could sit up and crawl at 7 months, and walk at a year. She could also ride a ride-on tricycle with no pedals at 9 months zooming around the house at some good speeds.

Paige’s language seemed to initially develop very well with her being able to speak at 9 months. She could say “bye-bye”, “hello”, “no”, “mum”, “ball”, “up please”. And once she even said “granddad”. But after about 18 months of age her speech dropped off to the point where now she doesn’t have any words at all. At first we thought it was because she couldn’t hear very well as she had a run of ear infections, and at around about the same time there were other stresses in her life such as moving house and a finger injury.

The hearing issue was confusing because you could talk to her and it was as if she hadn’t heard, and she would ignore loud noises like popping a balloon, yet you could ask if she wanted a biscuit (or banana etc) in a normal tone from the next room and she arrived like magic!!

She was particularly clumsy when tired and likely to fall over, more than might be considered usual.

However, there was enough doubt to ask the Plunket nurse, who told us that there was nothing wrong “and anyway the McKenzie Centre won’t see her at this age”. Fortunately Cheryl picked this up and rang McKenzie Centre of her own accord, and they agreed to see Paige on the10th May 2004, she was 2 years and 1 month old at the time. She wasn’t talking and usually indicated her needs by squealing and physical gestures. Paige was enrolled at McKenzie Centre from 28 June 2004 until 5 April 2007. During this time Paige received early intervention support from her key workers on a weekly basis.

We are grateful everyday as their support and assistance have without doubt saved Cheryl and Paige from a period of time that could have been full of uncertainty and recriminations. And it would have been much longer before they got to see a paediatrician.

Paige was diagnosed with Retts Syndrome, on 23 May 2005 by her Paediatrician David Newman of the Child Development Centre, Waikato Hospital.

Learning to live with a Retts child is a challenge. After the initial shock of the diagnosis, then getting on the internet to learn more and getting an even worse shock, we decided that immediately all that had changed was our expectations of Paige’s future. Since then we have mostly taken one day at a time. Research has come a long way since that day in May 2005 and now there is even hope of a control of the condition in the foreseeable future, but we are still talking in years not months.

Paige could feed herself finger foods from quite early on, which she can still do, but any thing soft or healthy we have to feed her other wise she will not eat it. She makes a lot of mess at every meal every day, which makes mealtimes quite a challenge for her mum. She will eat dirt and things in the house like raw potatoes, this is called pica. (Some kids eat crayons and other strange things)

She still cannot use a cup with out a lid. And watching friend’s younger children who have bottles she has decided that she wants to have one again as well. She indicated this quite clearly when I gave her the cup. She threw it at me and pointed to the bottle that had been left at our house one afternoon. (This is age 5).

Also her social and communication skills are markedly delayed. When she was little she would get aggressive with visiting children, regardless of their age. As she got more used to other children and particularly once she was seeing them at McKenzie and kindergarten she had worked out how to cope with them and the aggression virtually stopped. She will play on her own and likes to have other kids around, but doesn’t seem to comprehend shared play. She likes to have a lot of space around her and is very independent.

Paige is very sensitive with her skin and likes to be touched and also when she is playing will have repetitive little behaviours with pinching or licking her inner arm, as well as the typical hand wringing.

Her sleeping habits are okay. She used to be a very poor sleeper, especially with the reflux that she had. At about 3 she was referred for a ‘sleep’ test to screen for Landau-Kleffner syndrome, after which she had a whole new appreciation of sleep. Now she sleeps though the night most of the time.

Paige doesn’t have any noticeable activities that would suggest that she was having seizures and she seems to have a very high pain threshold in that she doesn’t actually feel or notice pain.

Paige is a beautiful girl with heaps of personality and the potential to be bossy! Grandma took her for a haircut one time, it was a disaster! We don’t know where she thought she was going but that was not it and she was not impressed!!

We are very lucky with Paige. Despite her handicap she still has use of her hands, though she has lost the grasp with one; and she walks and sometimes runs. She understands most of what you say to her and can follow simple instructions. When she was little she spent a lot of time playing with toys and things but now she usually doesn’t instigate play. I think she finds motion activities most fun. Paige has never really enjoyed sitting listening to stories; her attention span for them is very short. We always wondered if it was the hearing thing. Visually she did not seem to see anything high up. With the exception of one photo of her uncle as a baby, anything high on the wall, ceiling or in the sky was not recognised, and at a magic show she could not take in the concept of what was happening on the stage. In her world everything can be touched. She has never had any interest in animals, which is unusual, though there was a love-hate relationship with their cat, which was funny to watch. As Paige has got older they just ignore each other’s presence. She enjoys a ride on the motorbike or pony, and likes going to the miniature trains.

An application was made for funding for Paige under the Ongoing and Reviewable Resourcing Funding under Criterion 1. The application was successful and Paige was allocated funding at the very high level under Criterion 1 because she requires intensive specialist input at school. In order to be allocated this funding children have to have extremely high needs.

Looking after Paige is a full time job. Cheryl has to carefully monitor Paige because she seeks information orally and puts everything into her mouth. Paige does not have any awareness of her personal safety, she likes climbing but she does not understand anything about consequences e.g. she will step off climbing equipment. Yet she can learn boundaries in familiar surrounds such as a veranda. Paige does not have any expressive language so she is unable to let us know if she isn’t feeling well or if she has hurt herself, she does not appear to feel any pain.

Otherwise with her development she is still running around and playing using her fine motor and gross skills that are fairly consistent for her age.

She can climb steps/ladders, run on the tramp and get a bit of a spring bounce, put her washing out, tip water from one bucket to another thou she does need a bit of coaching.

Paige is a delightful little lady who warms the hearts of those who know her.

Written by Cheryl Eales (mother) and Lyn Ayre (Grandmother)