Max Desorgher

Sarah's lasting legacy

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In memory of Sarah Johnson-Desorgher
ADD International

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Story

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Sarah was an extraordinary person who overcame extreme obstacles to became a loving and giving person. She died in 2007 as a result of Epilepsy, but her legacy lives on in the work of World Community Autism Program and the Special Diet that was named after her.

I first met Sarah in 1997. We asked her one day while we were coming back from visiting a family with an autistic child: ‘Do you want to travel and teach people about autism'. She said she did. So we first went to Africa and rented a small house near Pietermaritzburg in KwaZulu-Natal province and lived there among the local population for nearly two years. Sarah made a lot of friends there including Connie, who we met in an African village in Limpopo province. We stayed for two weeks with her family, and during that time, Connie travelled with us to the borders of Zimbabwe to witness the total eclipse of the sun at Musina. All night we listened to South African music at the Eclipse Festival.

In 2003 she came with us to Malaysia. Our visit was organized by the ‘Parents for Autism’ group who became our friends, including Hin Yue Peng, a journalist on the Star of Malaysia paper, who wrote articles for the national paper.

http://www.saras-autism-diet.freeservers.com/WCAP/Serving-Sara.doc

Sarah loved the shopping and the many restaurants and the travelling, but above all she loved the people we met, who all treated her with such admiration. She gave such hope to so many families. 

While in Africa, we started the World Community Autism Program to promote the Special Diet that had helped Sarah and so many other autistic people. It was her work as much as ours that helped us to reach out to so many families around the world because she was always so positive and relaxed and happy always wanting to reach out to people, she showed that you can experience these conditions, go through so much suffering, and yet come out of it with a greater love for humanity and a greater passion for life.

http://saras-autism-diet.freeservers.com/

Thanks to her Special Diet, and the love she received from so many people, the autism was no longer a problem for her, but the epilepsy remained a handicap. But she never complained about it, and got on with living her life to the full. Above all she loved to go to school and later to college and the freedom that gave her.

Wherever she went to school she was loved because she was such a positive student. She studied endlessly, and was particularly interested in reading about countries around the world, so it was especially wonderful for her to get to travel to some of the places she had been reading about since she was at school.

Sarah emerged from the conditions of autism to become an intelligent, positive and delightful person with a great sense of humor who loved life and was loved by many people. She loved swimming, eating out at restaurants, reading, travelling. She liked to watch the food and travel channels on TV as well as going out to the movies. She remembered everybody we met, their names, even their phone numbers.

Sarah became a world traveller, but some part of her always yearned for North Carolina, and the people who had first taken her in and rescued her from her  early life, and where she had first seen the world clearly through glasses instead of through a haze. That place was Glen Alpine in the foothills of the Appalachians. We also lived for a while in a cottage right up in the mountains in a place called Spruce Pine. Sarah once met Chief Two Trees, a Cherokee medicine man. 

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About the charity

ADD International

Verified by JustGiving

RCN 294860
ADD International is a disability rights organisation. We partner with organisations of disability activists and help them to access the tools, resources and support they need to build powerful movements for change. In this way we empower homegrown leaders to realise the change they want to see.

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