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.

Sisters Don't Need Words

Having a sister is like having a best friend that you can’t get rid of.

And thank goodness too!

My sister has taught me everything that I really need to know. She is the greatest gift to my heart and a beautiful demonstration of what life is really about.

Chelsea came into my life on the 3rd of December 1996. Being the oldest, I thought that I would have a lot to tell and teach her but as the years rolled by I realised that it was actually the other way around.

For the first five years after Chelsea was born I remember life being confusing. For many months of a few years I would call the Hospital my second home because that is where I would go everyday after school to visit Chelsea and my mum. At the time, I thought it was rather exciting to go for a ride in the car so often. Looking back I realise that my parents would have been under immense strain and worry. As there is only a five year gap between Chelsea and me, I was just as oblivious to everything as she was back then. But when I became more aware I noticed that my sister was taking a really long time to grow up.

No one was able to give us any reasons as to why Chelsea was so “special” and all we could say to curious people was that “Chelsea is globally delayed.” Chelsea had gone through many tests in search for the disability that she had but all were unsuccessful. We went through stages of hopefulness for closure that was quickly followed by disappointment. Chelsea had also been tested for Rett Syndrome and the results had shown negative. Not until about three years ago were we told that even though Chelsea tested negative she had all the classical symptoms of a Rett girl. After many years of being in the dark about something affecting Chelsea so greatly, it was good to put a name to the disability.

Chelsea and I have the most wonderful relationship. It is not the typical sisterly love where there is constant bickering and whinging. In fact, Chelsea has never once complained about me despite the teenage mood swings I have ever so often. I strongly believe that the bond that exists between two siblings goes beyond words. Chelsea doesn’t have to say anything to me but I know exactly what she means. All Chelsea has to do is smile and it makes my day. I know that whatever Chelsea’s face shows it means exactly that. If Chelsea is happy, you’ll know it. If Chelsea is sad, you’ll know it too. Chelsea has the most amazing eyes that glisten with knowledge and an absolutely infectious laugh.

Having a sister like Chelsea comes with many extra responsibilities and at times it can be overwhelming. I think all siblings will know this feeling. The question of “Why me?” has entered my mind on many instances. I have found myself taking on the role of a parent towards my sister and thinking to myself – “no one else would ever have to do this!” When I’m brushing my sister’s teeth, I sometimes think to myself that the two of us ought to be out shopping instead. But when you think a little further, it is clear that you wouldn’t want your sister any other way. Chelsea has taught me to make the most of every day. If I feel as though I cannot do something, Chelsea reminds me how much closer I am to achieving it than she will ever be. Chelsea makes life look like a breeze for me! I walk out of the house everyday knowing that part of what I’m doing is for my sister.

To all the siblings of Rett girls, it takes time to understand and then accept the circumstances that we have been put in. As difficult as life can get, everything happens for a reason. We have been put in this position because we can handle it. You are not alone in what you feel. We have all felt frustration, anger and sadness to say the very least. What we mustn’t forget are all those times of happiness and pride for the small things only we know the massive significance of.

Life is not measured by the number of breaths we take, but by the moments that take our breath away.

Every moment with my sister takes my breath away.