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.

Sarah Holten's Story

Sarah Holten was born 31st Oct 93, she was a delightful baby, placid, sleep well, too well! She never crawled, but walked at 9 months old. She was very active, could use a spade and bucket at 18 months old, was finger feeding herself.She loved to climb on chairs, tables, benches.

At two she was starting to bite her thumb more and more but only when she was having what appeared to be a tantrum. She was losing her hand function, looking back she was having trouble lifting her ride on toy up the few steps into the house, which she had been doing in the months beforehand. And holding things for periods of time.

She seemed to be happy around other children but was not doing alot of fine motor activities like building blocks, if I tried she would get angry. She was talking in singular word, like mum, Dad, nana, Milo, car. She was quite social still, but started to become more in her own world at times.

At 2.5 yrs old she had repeated the words from a picture book "baby lamb" several times during that day, the next day I brought the same book out, but nothing and never said those two words again. Her biting was becoming more aggressive and frequent. At age three she could still manage stairs well, now she won't attempt them without assistance. I was starting to think she was acting like this due to living in a violent relationship at the time. we got out that situation and went to see our GP who referred us to a Peaditrian. Sarah was diagnosed with Rett Syndrome in Dec 96. She was having terrible sleep patterns, screaming a lot, aggressive, biting, banging her head alot on anything, twisting and pulling out the hair above her ear. She now required arm-bands to protect her hands from the hand biting and mouthing. Which looking back was one of the best things for her, She was always stopping and looking down with her hands in her mouth, the armbands curbed this so she was standing straighter, and most of all looking straight ahead, which I think helped her with eye contact. However she was suffering with undiagnosed reflux and properly Gastritis. She has had a huge problem with swallowed air, which I'm sure was happening back then too. I was very uneducated about constipation then too She could jump very well on her tramp until she had a injury to her foot 3-4 yrs ago. She never regained back to were she was, but are very lucky to have her still very mobile. She had surgery for heel lengthing July 05, which went well and saved her mobility. She has a mild Scoliosis.

She is still a social wee angel, she loves people, music (Bob Dylan, The Corrs, Eagles are favs), food and nature, and most of all hugs:))) Eye pointing is her strongest tool for communication, along with her vocal sounds and body language. She loves her little brother a lot and has good interactions with him, which is lovely to see.

A very special soul spreading a tiny big secret about life...LOVE:)))