MELA Pachi was a healthy 26-year-old public servant when she was diagnosed with limb-girdle muscular dystrophy.
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"I used to manage the Births, Deaths and Marriages office,'' she said.
"That was one of the hardest things - giving up work. It is a progressive condition and over the years it gets worse. The main reason I gave up work was I was meant to be looking after staff and I was spending more time in hospital than at work.
"My specialists were on me to give up work. I kept fighting it. It's been about seven years since I left. I still keep in touch with my old boss and a few of the others.''
Ms Pachi, who is now 46, lives with her parents Pina and Tony, who are in their 80s.
Her sister Anglea suffers from the same condition and was diagnosed with limb-girdle muscular dystrophy when she was 29.
Ms Pachi said she was told last year that she should live in a nursing home, but neither she nor her family wanted her to move out.
"I had been in hospital for about three months and there was talk that Mum and Dad would not be able to cope here at home with me with the level of care I needed and there was talk about moving me to a nursing home and it was not really acceptable to anybody,'' she said.
"The doctors and nurses and physios were all saying it at the time, only the social worker was on my side. I don't want to go to a nursing home.''
Ms Pachi's friends have started the "Mela: MD and Me" fundraising committee, which will officially be launched on Sunday.
A large fundraising dinner will be held at the Hellenic Club Friday, October 24. It will include a three-course meal, auctions, raffles and lucky door prizes. The master of ceremonies will be Luigi Marasco of Sydney and the auctioneer will be Jason Roses from Luton Real Estate. There will be a guest appearance by comedian Joe Avati. Tickets will go on sale on Monday, June 2, and can be purchased directly through the Hellenic Club for $120 or $1200 for a table of 10.
