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.

Jade's Story

Can you imagine what life would be like if you woke up tomorrow and you could not speak, you could not say one word. Nothing would come out of your mouth, you knew what you wanted to say but you had no way of telling anyone because you had no form of communication.

On November 2nd 1983 a very special person entered my life and this world, that was my little sister Jade. This was the day that changed our family and my life. Life before this was what you would call 'normal' - Mum, Dad and two girls living on a small farm just out of Temuka. This specific day had a considerable impact on bringing our family closer together. We were all happy with what we thought was a fit and healthy bouncing baby girl, but little did we know what was yet to happen. November the 2nd brought us a lot of laughs, love and joy but also combined with fear, worry and stress.

At nine months old Jade was taking regular visits to hospital to have many tests done as she was not doing what so called 'normal' chiidren were doing at her age. A few days later the bombshell was dropped and we were all told that Jade was not going to be a 'normal' child.

No explanations or help were offered as to why Jade was constantly grizzly or unhappy ... we were all left in the dark. All I wanted was a sister and now we have doctor's appointments, surgeries, medical bills, a strained family relationship and no more free time. When you have a disabled sister you don't just have to deal with the fact that she has special needs, you have to adjust to a whole new way of life.

I have played a very important role in shaping Jade's life. I think that it is fair to say that she also played a role in shaping my life. I think that I became the person I am at least in part because she was my sister. I am not a person who easily judge's people by what they can or cannot do, nor judge them by what they think, or how they can perform a task. Each of us has a way of doing what we can, and in what manner we can. I have always felt close to those who did not have the abilities to succeed or perform as so-called 'normal' people. It was not until now that I realised that each of us, no matter what our talents, has our own voice and can help each other in our own way.

To me Jade is very special as I am her words, I have to speak for her and wonder what is wrong when she is upset. Jade has only ever communicated 3 words, mummy, daddy and nana. She tries really hard to express her feelings and emotions but this just results in frustration. When Jade started to walk, which was on her tiptoes, she stopped saying the only three words that she could as if she could not do both at the same time.

Simple things that 'normal' families take for granted are a big deal and a huge achievement in our family. For many families the day that their child managed to distinguish between yes and no by themselves would be a distant memory of the past. To us these small tasks are signifying a whole new stage in Jade's life, which we will treasure and remember.

I often think what life would be like without Jade and everytirne I reach the conclusion that I would not change anything for the world. I have now come to accept that Jade is herself and that she has her own charms and that we love her smile and never mind that she won't be a Prime Minister. I will do my best in encouraging her to achieve her dreams, as I can not image life without her. Many times growing up at home I got frustrated and angry with her for not being able to do things for herself. Jade has made our whole family better people, she has also taught us to accept no matter what, people's physical and intellectual appearance. Jade has brought many tears to our family over the years, and I have come to realise 'How many families' lives run smoothly?' She has taught me that while some things in life are a minor problem to some, this can be a big deal to others.

Jade came without a set of instructions for her upbringing into our family. We had to figure things out for ourselves bit by bit. Living with Jade has now become easier than before. But every day now and then I yearn for a Jade that I will never have. A Jade I had hoped for. Our family over the past few years has had the good and the bad times, but throughout it all we have stuck together and supported one another. I would like to see things change in the future in making society aware that people who stare, whisper and speak their thoughts often scar the feelings of those who care.

We need to help and support each other. We can help each other, each in our own way. Let us begin by recognising people with special needs and their families as complete and capable people who are welcome as part of our human community. Treat us as families, not as sick families, disabled or damaged families. As a family we have the same joys and desires as any other family.

Jade is my sister, my teacher and my best friend. She has taught me a great deal about our world. She has taught me things I never knew that I needed to know. She has taught me another side of life, which I did not know existed. She has made me aware and able to understand other people's needs and the value of life. Jade is my best f riend and an excellent listener who can be trusted with my most inner secrets ... I would not change anything for the world.

Jade, it's a rough world out there. The rules and discipline I try to instil and that you get so angry with are meant to shelter you from harm's way. Being the young teenager that you are you still have so much to experience and learn. I know that you think that you know it all yet if you really knew it all you would know that the most important thing for you to remember is that I love you and will always be there for you. When you fall down I will pick you up and give you a nudge in the right direction. The next few years are going to be like a ride on a roller coaster, and I'm here to help make that ride a little easier for you.

You see I have been through the emotions and feelings that you are having and will be experiencing. I know the hurts and the pains, the anger and the joys and yes the loves. I've been there and have feelings too. So please don't abandon me along your path of growing up for I am your friend, your teacher and a dry shoulder to cry on, and one of the many people who love you always, no matter what.

Just spare a thought for the not so fortunate and remember,
they did not ask to be that way.

Nicki Stratford