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`I just need some help, I just don't know what else to do': mom continued from p.22 In frigid temperatures, their car heater is never on; in the heat, besides the air-conditioned car, there is a USB fan blowing on her and she is wrapped in ice-packed tea towels. When the family is out in public in colder weather, Jason will sling one of his daughter's heavier coats over his arm to keep meddling strangers at bay. Calling it the worst decision they ever made, last April, the Browns agreed to more genetic testing. As vial after vial of blood was collected, both parents had to hold Stephanie down. "It went on and on and on. When she got home from that, she regressed and we still haven't got her back yet." Stephanie stopped using the potty, lost weight and stopped talking, walking, moving, living, said Beverley. "She became a child who viewed the world as scary and she developed a fear of everyone and everything. Everything is unsafe until proven otherwise. It's why we medicate her for anxiety." Medication made "a massive difference, but nobody feels good about it," said Jason. "We cried a lot," added Beverley. To break through Stephanie's wall of fear, Beverley grasped at any potential remedy: music, Hemi Sync, TV with sound, TV without sound and homeopathic anti-anxiety pills (which caused an adverse reaction). They have reached out to places in various parts of the world offering intensive feeding programs, a hospital-run eating disorder program for children 12 and under, and sent Stephanie's file to Best Doctors, which collects a patient's medical history and provides access to specialists and treatment options. Nothing worked. Every night, they leave solid foods in front of her and walk away in the agonizing hope one day Stephanie will pop something in her mouth. "She wants to eat. She chews beside you. She wants to, but she cannot let herself do it. Nothing goes past her lips; it's the saddest thing you've ever seen," said Beverley. A feeding tube is an option, but the Browns are loathe to go that route. The idea of the surgery, of adding another layer of trauma to their daughter's life, frightens them. "We're worried we'll damage her to the point mentally, we'll never see her again," said Jason. So, Stephanie is bottle-fed. They comfort her as she fights the bottle, crying and arching her back, until finally "she's broken, she gives up the fight, her eyes roll back in her head and she's no longer accessible," said Beverley. "You never get used to it." It's a constant battle to ensure Stephanie doesn't lose weight. "We literally track every millilitre that goes into her. We even estimate how much she vomits," said Jason. They deferred further genetic testing because of the profound change in their daughter. They were also told there was a low probability doctors would be able to determine a cause. In a desperate attempt to help her daughter, Beverley wound up at Burlington's Danielle's Place, a resource centre for people with eating disorders. "Danielle's Place is like a last resort," said Beverley. "My goal in going there is to learn what happens in your head that tells you that food is bad." "We've had a few doctors say if you take age away from it, she has a perfectly classical case of post-traumatic stress disorder that drives her straight back to a safe spot, which is pre-any kind of development essentially. But that's impossible according to every single person we've talked to for anyone of that age," said Jason. Treatment for PTSD would be cognitive behavourial therapy, but Stephanie won't talk if she is upset. "She understands everything you say. She doesn't use any words unless she has to, that's how she rolls. She understands everything that's happening around her, which is what confuses them," Jason explained. "They think because she's not saying anything, she's not aware but she's very aware and then her anxiety ratchets up with what they're talking about. I can see it. It's really unique; she's stuck in this spot where she just can't move forward. "There are millions of children who go into hospital and come out fine; they really don't remember. That's what makes Stephanie so different is that she does remember all of that stuff and has very clear links associated with certain noises, smells, sounds that put her right back in that spot," said Jason. "I can tell you everything that it's not, but I can't tell you what it is. In two weeks, she could stand up and start walking and talking; there's nothing stopping her, but technically she's disabled now. She may be disabled for the rest of her life; she may be disabled for another week. How do you plan around that?" The not knowing is the worst and the parents do their best to mask their fear and frustration in front of Stephanie. "You can't have that attitude because she's very in tune with what you're thinking," said Beverley. "The first bite of cake? We're still waiting," said Jason. "You miss all that (the milestones) because you spend all your time wondering is she even going to make it to three, is she going to make it to four?" "It's hard on your nerves, it's hard on your soul," said Beverley. "We're not the same people. When you face the fact your child may not live, it changes you in a way that's not positive." Humour is one coping mechanism, said Beverley, because "If you're laughing you're not crying." After the last round of testing, the Browns were terrified they might never `see' their daughter again. "It's still a work in progress, but we get to see our sweet Stephanie more and more." Despite her struggles, Stephanie draws people in, said her mom. "She just has that personality, you want to help her. She's just the sweetest little thing and to watch her struggle the way she does... 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