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.
Kathy, Stacie and Scott. Kathy Hunter is the Founder and President of the International Rett Syndrome Association.
When Kathy and Scott were given the diagnosis that their daughter Stacie had Rett Syndrome, she thought there must be other parents who were struggling with this rigorous challenge to parenting.
She thought she would try to find some fellow travellers – little did she expect her kitchen table would become a major world wide office with letters from all over the world.
She has been our heart and our network and her warm inclusiveness has meant the medical profession have listened carefully to the parents observations and meticulous note taking over the years as so many parents found the different stages of the disease hard to fathom.
Many of us thought we could get back the fine motor skills and the words the girls had started to say. It is surprising the number of girls who were very tidy and good at putting things away in order before they lost the use of their hands.
Kathy never gave up on her quest and last time she was in NZ she knew the search for the gene was very close to finding the answer to where the fundamental problem lay.
It was not long afterwards our Dr Mike (Sullivan) was visiting San Francisco to attend a paedatric conference when he saw the late breaking news the Rett Gene had been found and thought he should go to the Rett Booth at the conference to get the information for his former teacher Prof Mac Gardner who had always had a great interest in Rett Syndrome. Dr Mike being such a good student had been fascinated by Mac's lecture. Imagine Mike's surprise when he found the gene was MeCP2 and involved in the methylation process he had worked on under Prof Anthony Reeve whilst studying for his PhD.
Stacie and Kathy. Kathy said she had just been to Dunedin and he should meet Gillian, so across the miles two New Zealanders were put in touch with each other and Rett NZ has been so fortunate to have had Kathy's quick intuition enlist a devoted supporter of research and the comfort of being able to have the tests done in New Zealand. Not all the girls with Rett Sydnrome or variations of the Syndrome have positive tests – however, you must come to the conference and learn more about this on April 27–28 2007.
There was great competition between a number of leading universities and high flying scientists. With the answer to Rett Syndrome there will be so many answers to seizures, circulatory problems, scoliosis etc.
Kathy's work has meant she is now on the Board of the Prestigious of the National Institute of Health in USA and goes to Congress with Julia Roberts seeking funding for research. Kathy's twin roles as an expert and a parent are wonderful for parents and families all over the world.
We look forward to making Kathy and Scott's visit to New Zealand a memorable one. We have always worked closely with Rett Australia and Kathy and Scott will go to Sydney for a meeting there en route to New Zealand.
Thank you Kathy for all you have done for so many families to make our journey see the rainbows on rainy days.