A woman living with a debilitating condition is asking for help to build accommodation back on her island home so she can visit family while she can.
Ann Main has lived with syringomyelia for more than 30 years.
The condition means fluid from her brain leaks into her spinal cord, blocking signals from her brain to the rest of her body.
After surgery in 1994 to attempt to drain the fluid with a shunt failed, she became a paraplegic.
And despite two more rounds of surgery in 1995 and 1997, her condition has continued to deteriorate, rendering her quadriplegic in 2011.
Ms Main, 57, requires 24/7 care and has a team of carers who look after her, even repositioning her in bed at night every two hours to keep pressure sores at bay.
“They are my hands and legs,” she said of her carers. “You can hear me speak but I can’t do anything else.”
Despite the hand she has been dealt, Ms Main said she tried not to let it get her down.
“Everything went wrong but I will think positive because otherwise, I wouldn’t be here today,” she said.
“Despite all the challenges, I remain determined to be happy and positive.”
Ms Main was born in Fiji but has lived in Australia for 33 years.
She has a niece and nephew here but her five brothers and two sisters live in Fiji and visiting them had been one of her pleasures in life before she needed the type of wheelchair she has now and the degree of care she now requires.
“It’s very hard for me, being here (without visiting Fiji) for six years now. Going back home is difficult in the accessibility of the family home,” she said.
“They don’t have what I have here. Going over there is hard. There’s no accessibility.”
Ms Main decided to solve the problem herself by building a modest two-bedroom house for herself and a carer on family land so she would have somewhere to stay when visiting.
After saving money from her disability pension for years, she engaged a builder who was recommended to her but she said he stopped work and stopped communicating after pouring the slab.
“I trusted him and sent the amount that he needed to build the house. I sent it to his bank account. I thought he was going to do the right thing by me,” she said.
Ms Main remains determined to finish the house and has been sending money when she can to relatives, who have got walls and a roof on, but she said it remained a “shell”.
One of her carers, Shana Louvet, has established a GoFundMe fundraiser on her behalf to try and raise $50,000 to help her finish it.
“She’s worked out it should be enough to finish it. It won’t be enough to make it homely but it will make it finished to use,” Ms Louvet said.
Ms Main said she would love to see her family for Christmas but simply wanted to spend time with them before her condition worsened, which could be at any time.
“I just want to be able to go home as much as I can while I can,” she said.
