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www.insideHALTON.com | OAKVILLE BEAVER | Friday, January 23, 2015 | 22 `It was awful... no one knew what to do': father continued from p.8 "As far as we knew, we had a perfectly healthy baby," added Beverley, 38, who had just opened her own catering business at the time. Stephanie remained in hospital for three weeks after her birth because of Bradycardia episodes, where her heart rate fluctuated as her nervous system stabilized. While there, she wasn't consuming enough through nursing to gain weight so the decision was made to bottle-feed, and then tube-feed her. "That's where her eating aversion started, I'm sure," said Beverley. Stephanie couldn't handle the volume of food being fed to her through a tube. "She would overflow and it started coming out her nose, out her mouth, she'd be choking," said Jason. Once their newborn was on an appropriate feeding schedule, the couple was allowed to take Stephanie home. "When we brought her home, we all, doctors included, thought she was a normal baby. She was happy, eating, sleeping. There was no indication she was not like other children until we saw the pediatrician for follow-up appointments," said Beverley. At three months, Beverley stopped nursing and Stephanie was put on high-calorie and hypo-allergenic formulas to increase her weight. She was monitored with twice-weekly weigh-ins. At five months, Stephanie had gained a mere half a pound and was hospitalized. "They told us at the time, `you may have three people going in (to hospital), but only two people coming out', so I closed the (catering) business," said Beverley. "They were concerned that she had something degenerative that needed to be addressed before she died." Jason took a leave from his job and they moved into the hospital. Stephanie was diagnosed with the umbrella term of failure to thrive, root causes of which range from feeding to metabolic issues. The family saw specialists from every hospital department with the exception of geriatric and oncology, said Jason with a wry smile. A myriad of tests were done, including those for cystic fibrosis and Williams syndrome, the latter a condition fraught with medical problems and developmental delays. Affected children tend to be extremely social and endearing, which is why Stephanie was tested. Both were ruled out. During her hospital stay, Stephanie was taken to a procedure room, without her parents' knowledge, so blood could be drawn. "She came back grey and swaddled and was never the same," said Beverley. "She stopped smiling and moving in her crib for the duration of her stay at the hospital. She had been traumatized and it still weighs heavily on us." Once home again, the family enjoyed some stability. Doctors had advised tube-feeding Stephanie as it was hoped that if she wasn't wasting energy eating, she might grow. "It was awful," said Jason. "She's ripping the Stephanie Brown thing (tube) out of her face. Every time we shoved the tube up her nose, we'd be crying. Literally , you've got this tiny frail little kid you're pinning down, who's fighting against you like a caged animal, trying to delicately shove this thing in and you have to do it fast because it makes her gag." After dealing with broken pumps and clogged tubes, the parents went back to bottle-feeding, and began "living like a family," said Beverley. There were ongoing medical and therapy appointments at both St. Joseph's and SickKids -- when the family transferred to Oakville -- and doctors warned them that because of her fragile health, Stephanie should be protected from illness. "We didn't take her out during cold season and we didn't allow her to be near anyone with any sort of cold or illness," said Beverley. "We lived like that until Dec. 28, 2013 when our genetics specialist told us it was OK to let her live like a normal person." Stephanie's first birthday was bittersweet -- she had lived to celebrate it, but she weighed just 10 pounds. She had no muscle mass from the neck down and couldn't sit up on her own until the day after her first birthday. Because Stephanie never walked, her legs didn't grow properly so all her tendons and ligaments are looser than they should be. She began wearing braces to keep everything stable. "No one knew what to do, the GP , the pediatrician, no one could figure out the root cause of this failure to thrive at all," said Jason. "We started doing a ton of research on our own." A calorimetry test showed her burning 210 per cent of the energy a normal person would. "Her body is using and burning twice the energy of a normal person and there is no symptom of any disease or condition that aligns with that, that doesn't have a very easily identifiable cause like a thyroid issue," said Jason. As a byproduct of producing so much heat, Stephanie is prone to heat stroke. 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