RUBY Taylor has never eaten, she's never chewed and never swallowed without gagging.
All her nourishment comes through tubes, to which she is connected 24 hours a day.
The 17-month-old Coffs baby is suffering from an undiagnosed gastric disorder, which in spite of repeated invasive testing, remains a mystery.
For her family, the last 18 months have been a nightmare - hospitals, sleepless nights, the extreme worry of having a very sick baby, the stress of separation, financial pressures - normal family life with visits to the beach and time with friends is a distant dream.
“There have been times when we thought we might lose her,” her mother Virginia said.
“At the age of six months she had an operation, which revealed just how bad her internal problems were - she had been in a lot of pain and we hadn't realised how bad it was. Since then it's been trial and error with the doctors trying many things - they've all been wonderful but they can't offer us any answers.”
Five months ago, when Virginia and her husband Michael were at very low ebb, a glimmer of hope appeared.
“My sisters showed me a magazine story about a Tasmanian family who had sought the help of a clinic in Graz, Austria, which successfully treated their child with symptoms just like Ruby.
“I wept tears of joy... I also felt sad for their suffering and overjoyed they had found something that worked for their child.”
The clinic specialises in helping tube-fed children learn how to eat in a three week, intensive, all-family program. Success rates are excellent and the Taylors are booked for November 30.
“The tubes cause all sorts of dependencies - once you get the child onto real food and they stop retching and vomiting, their development picks right up. Even if we can only improve her quality of life, we've won because all our lives will improve.”
The support of family, friends and neighbours has been unfailing. Now they have organised a benefit night to help send the family, including Ruby's brothers Jonah, 7, and Levi, 5, overseas.
“We've jumped through all the hoops and started a registered charity, Ruby Goes to Austria,” grandmother Chris Dodd said.
“Everyone has donated so generously - 12 holidays, here, the Gold Coast and the Central Coast, a ruby ring, plasma TV, three children's motor bikes, valuable vouchers from local business houses - it should be a wonderful fun night.”
The benefit will be on November 13 at the Coffs Ex-Services Club, 5.30pm for a 6.30pm start - a week before the Taylors leave. For more details go to firstname.lastname@example.org or phone 4931 9687.
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