BATTLING ILLNESS: Maddison, Savannah and Faith all suffer from Ehlers-Danlos syndrome, a genetic defect affecting skin and muscles.
BATTLING ILLNESS: Maddison, Savannah and Faith all suffer from Ehlers-Danlos syndrome, a genetic defect affecting skin and muscles. Contributed

Struggling family dreams of holiday getaway from hospital

BELINDA Menzies would love to treat her family to a cruise this Christmas.

But with husband Craig unable to work because of a severe back injury and their daughters Maddison, 14, Faith, 11 and Savannah, four, struggling with a debilitating illness, the chances of Belinda making that wish happen are extremely low.

The 34-year-old Warwick woman and her little girls all have the genetic condition Ehlers-Danlos syndrome.

The disorder stems from the body producing faulty or small amounts of a vital protein called collagen that strengthens the connective tissues including skin, muscles and ligaments. "We never knew about the girls' condition until Maddison was eight - she started having problems with pain and clicking in her hips," Mrs Menzies said.

"Up until then we were told that Maddison's health issues were just unlucky and bad luck.

"When we took her to see the doctor about this he started to ask about problems she had and also things that he knew from my history.

"He was able to join the dots for us and asked if anyone had ever looked into EDS.

"I asked our pediatrician about it and it was like light bulbs lighting up."

Mrs Menzies said the diagnosis was heartbreaking.

"It was devastating to discover that it was my genetic condition that Maddison had but at the same time it was a real relief as it was an answer to many of my own medical issues that had been dismissed for many years," she said.

With her two younger girls diagnosed as well, a lot of the family's time now revolves around medical appointments in Brisbane.

"Between the three girls we see about 17 different specialists," Mrs Menzies said.

"Most we see on a six-monthly basis but with so many other treatments like physio etc, we are at the hospital at least two times a month if not more.

"I try to co-ordinate the appointments so we make less trips to Brisbane."

The Menzies get a lot of help from the EDS support network, their relatives and friends. They also rely on the support of the Children's Hospital Foundation Queensland.

"Over the years we have attended the hospital, the foundation has always had volunteers available to come play with the girls," Mrs Menzies said.

"Last year when Maddison spent 22 weeks in hospital, Savannah spent every day down with volunteers while I was able to concentrate on Maddison's care.

"The facilities that the foundation supplies to families also make it easier for us when we are in hospital - like computers to check our email and contact family and pay bills."

As Christmas approaches, Mrs Menzies is dreaming of a little getaway free from hospital appointments and therapy sessions.

"After Christmas we would really like to get away for a week or two," she said.

"We are thinking of going camping.

"Although if we could go anywhere it would probably be on a family cruise as we have heard that the cruise lines make great cruises for families with special needs.

"This is only really a dream as due to the girls and I all having the syndrome and Craig with his injury means we are on an extremely tight budget."



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