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.
In 1977 our third daughter was born and until approximately 11 1/2 yrs of age we didn't know she had Retts Syndrome when she was at Wilson Home Takapuna Auckland. A student doctor did a thesis on Rett Syndrome and it was then she was diagnosed. Dr Rett had only just announced to the medical world more recently at that time his discovery. Until then she was an unknown intellectual disability.
Today she lives in a community housing trust home under the umbrella of Creative Abilities on the North Shore and is now 29 years of age. She has all the classic symptoms, ringing of hands, teeth grinding, controlled epilepsy, curvature of the spine, scoliosis of the feet and screamed most of her life night and day until fairly recently when her whole diet was changed. She is the happiest she has ever been in her life and it is thanks to the wonderful care given to her currently where she lives in Ramsgate Tce Mairangi Bay Auckland. She is a lot more focused. Today you can hold her tightly and cuddle her where as she used to fight being held even for a cuddle. She is a beautiful daughter. On a rare occasion she has said mum. She can sit up on her own and lie back down again which I taught her to do for a long time and she achieved by age four.
She was 3 months when she stopped developing, four months stayed the same, five months started going backwards, ten months before anyone admitted anything wrong but I knew at three months. A mother instinctively knows. She is with her child 24 hrs a day and doctors should never say you are a fussy mother and that every child is different. There is no excuse. Of course it never changes the fact. Linda has given our family and I speak for myself, the greatest thrills of my life, just to see her content, smiling, happy is joy itself. I thought for years that Linda might not live past 30 years but she has a wonderful appetite and her soft food is specially prepared with suitable food types but now I think she could live a lot longer.
Linda loves music and floating in the water in the pool by herself, she never sinks. In the last year even we have seen a marked improvement in the way she focuses on people. As as child she would always respond to the male voice far quicker than to the female voice.
Diane Ford (Mum)