Sarah's Story

Sarah was born in New Zealand but now lives near Sydney with her parents and her brother Hamish. Sarah comes to New Zealand regularly with her mother Kathy to visit her grandmother. This year they were staying at Paraparaumu beach so we were able to catch up with each other.

Sarah is looking so well and healthy. She was able to walk until quite recently and can still use her legs if her hands are held on each side or if Kathy walks behind her to help her balance.

Kathy writes:

"Sarah is doing well, not a lot of change. She is enjoying her programme now that school has finished for her. It is at the local shops which means that we can walk down most days and the dog is happy about that too because he gets walked twice a day. It is only for three days a week, 18 hours in total, but I have noticed that her seizures are not as regular as they were. This could be because she is not so tired, as school was hectic with a long day 8am to 4pm (2 hours travelling in a taxi). There are three Rett girls where she is (the agency is called Lifestyle Solutions) and the possibilty of two more in a year. So we are educating people slowly about it !!"

We went for a lovely walk down to the Sunflower coffee shop on Marine Parade. The owners were so welcoming and ensured we had a lovely table to look at the view. The food was served on plates which looked like sunflowers, Sarah thought they were lovely and her Danish looked most inviting.

When Kathy heard Kathy Hunter was visiting New Zealand she was anxious to know if Kathy would be able to come to Sydney as so many people feel they know her through her book and her articles in the IRSA newsletter. Two emails later Kathy and Scott are going to include Sydney on their itinerary.

Joyce Morrison’s family knew Kathy and Sarah when they lived on the Kapiti coast. Kathy was interested to know that Joyce was able to stay in the school system for three more years than Sarah was in NSW. It is always interesting to know what ideas we can share with each other.

Sarah used to love riding horses but she has had less chance to continue this activity since she left NZ.