For the parents of a Brisbane girl with one of the world's rarest diseases, just understanding what their daughter is living with would be a huge step.
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Claudia Doughty is believed to be one of eight people worldwide to be diagnosed with a crippling congenital disorder that gives her seizures, cruels her mental and physical development and destroys her appetite.
The 10-year-old has been fed from a tube in her stomach since the age of three in an attempt to combat her lack of appetite and control the seizures, which at one stage were happening 100 times a day.
She has been dubbed "The Girl Who Hasn't Eaten In 7 Years" but mum Simone Doughty said she wanted to move away from that term because she was still being fed, just not through her mouth.
"She just doesn't have that interest in food," the mother-of-three said.
"She doesn't look at you and want to share your sandwich and bite an ice-cream, she just wasn't interested in it."
Claudia doesn't have any language skills and is unlikely to ever be able to tell her parents she loves them.
But it wasn't until January this year that a $3000 blood test told Simone and husband Neil what was happening to their daughter.
Mrs Doughty said her daughter's condition had improved significantly since she was younger but was still hard to manage.
"At the moment, she has limited seizures," she said.
"She might have one or two pretty ordinary ones a year but she does have sort of daily absent seizures but they don't actually impact on her life like they used to.
"She used to spend days lying on the lounge non-responsive and pretty ordinary but she seems to have sort of grown out of that."
Because it's so rare, not much is known about Claudia's disease - congenital disorder of glycosylation (CDG) type 1e.
The Carseldine family doesn't know how long their daughter will live for or even much about the best way to take care of her.
They were told she would never walk but the plucky youngster proved doctors wrong when she was eight. Her parents cried when she took her first steps.
There's no cure but the Doughtys have at least been told the condition isn't regressive, so Claudia shouldn't get any worse.
"Day to day she's very happy," Mrs Doughty said.
"She does have emotions: she cries, she gets cranky, she can be a little brat.
"Her personality is generally quite happy and she's funny and sneaky."
Now they're looking for help to travel to France in August for the 2nd World Conference on Congenital Disorders of Glycosylation for Families and Professionals.
Even the most common classification of CDG, type 1a, has only been found in about 800 people worldwide, according to the National Center for Biotechnology Information in the US.
Mrs Doughty said her family wanted to go to the conference to learn more about Claudia's disease and get in touch with other sufferers.
"What we're hoping for is knowledge," she said.
"We want to understand exactly what it is because it's actually quite a complex disorder."
She estimates the trip to the conference in Lyon will cost about $20,000.
The administration worker, who has recently returned to work, said the few contacts she had made with the families of other CDG type 1e sufferers through social media were "fabulous".
