AN EMOTIONALLY and financially drained family is turning to the Ipswich community to help give a bright but very sick little girl a special Christmas; the gift of being able to play in water.
Mayana Wyles-Dudman was born with a rare disease called short gut syndrome; it means her intestines didn't form properly and are on the outside of her body, clearly visible.
The two-year-old can't eat normal food, she can't have a proper bath, she can't go swimming; she can't even play in the rain.
Now her financially stretched family is hoping the people of Ipswich will help them raise $500 to buy a special suit from a company in the UK that will allow Mayana to experience water like any 'normal' child.
It might not seem like a lot of money but for RAAF worker Eileen, a single mum with two other young children and limited ability to work full time because of the high level of care Mayana needs, it's too much to spend on a suit that will only last one summer.
Mayana spent the first 14 months of her life in hospital at Townsville before her grandmother and carer Eileen moved down to Ipswich for more family support.
Their every-day routine is filled with medication, changing dressings and emptying a bag that hangs off the toddler's exposed intestines catching waste from the liquid food she consumes through a tube.
Despite her condition, Mayana is a bright, intelligent, curious, social and happy child.
For Eileen watching her miss out on so many of the things other children get to experience is more heartbreaking than knowing she is suffering from a serious medical condition.
"We don't treat her like she has anything wrong with her... we treat her like she's a normal child," Eileen said.
"For me its watching her be so normal but also knowing she has such a serious issue that's the most difficult emotionally.
"How do you say no to a child when they ask you for a drink of water? I know she can't have it, but that's hard when she says she's thirsty."
Mayana might be able to have a transplant in the future, but for now her doctors have recommended that while she's healthy a transplant would be an unnecessary risk.
Eileen, who opted to take care of Mayana because her parents were too scared they wouldn't capable of meeting her high care needs, which required medical training, is already preparing herself for when Mayana starts school.
Today she will finish up with the air force after having cut back to only two days a week and is considering taking a teacher aide course.
"I want her to have the most normal life she possibly can so if that means I need to be with her every day to change her dressings I will be."
The dry suit Mayana needs to be able to safely play in the water is essentially a high quality diving suit.
Can you help?
Email Eileen at firstname.lastname@example.org
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