"Why don't you eat something," yelled a guy in a car speeding past Rose and Tani Schwarz as they made their way to the hospital in Calgary.
Rose would love to eat. She'd love to be able to taste and consume food just like anyone else, but she can't, and people's ignorance frustrates her.
"I've been both fat and skinny," she said. "People think I'm anorexic."
Rose said she has taken more verbal abuse from strangers for being thin than overweight.
"She's been offered a free sample [of illegal drugs] in Vancouver. They assume she's a junkie," said mom Tani.
Rose, who weighs around 40 kilograms (90 pounds) and stands about 166 centimetres (5'6"), suffers from gastroparesis, a digestive condition of varying degrees. Rose has one of the most severe cases her doctors have seen. Her vagus nerve does not function and stimulate the stomach to contract and digest food.
Rose was slowly forced into being housebound over the last six years, confined by never-ending bouts of vomiting and extreme weight loss which resulted in fatigue and malnourishment.
In February, Rose and her parents flew to Montreal where a feeding tube and an abdominal pacemaker were surgically implanted. The hope is that the pacemaker will awaken the vagus nerve and start her stomach again.
The surgeries were dangerous. Doctors put a direct line into Rose's heart in case she crashed during surgery or recovery. Email messages from her stepdad Gary Gilbert told of Rose in uncontrollable agony that often left them feeling helpless.
"She was down to 75 pounds," recalled Tani. "She had a few pretty bad nights. We had to come down and intervene."
The 20-year-old is no wallflower nor sad, sickly girl who people should feel sorry for. Rose sports several tattoos and body piercings and a partly-shaved head. She dresses in a Japanese, punk-infused style called Gothic Lolita. She has goals and dreams and a spunky attitude.
"I'm used to being stared at," she laughed.
Doctors won't know for months if the pacemaker will work, so for now Rose is fed 21 hours a day through a tube that goes directly into her small intestine.
"Except for the tube, my daily life hasn't changed," she said.
Tani and Rose went to see a specialist in Calgary in March to turn up the pacemaker's current. They hope to find a doctor in Vancouver who can do it for them so they don't have to travel to Calgary each time the adjustment is needed.
"She's not all better yet. There's a 50/50 chance it could work and how much is questionable. She's still throwing up stomach acid every morning," Tani said.
The family is also waiting to hear if BC Health Care will cover the costs of the life saving surgery. The pacemaker alone was $15,000. Rose's hospital care was roughly $1,000 a day for two and half weeks and there is still the actual surgery and time of multiple surgeons to account for.
"We have a good case. They [doctors] couldn't go any further in this province [to help Rose]," Gilbert said. "We have big appreciation for all the good people here. We love the Sunshine Coast. The energy's good. We're happy to call this home."
Tani said the funds raised on the Coast and back home in Grand Forks where they originated, were exactly enough to pay for all the non-medical expenses to Montreal.
"We didn't have to be worried," Tani said and wanted everyone who donated time and money to their cause to know how grateful they are.
Although not as quickly or dramatically as Rose would like, things are changing in her life. Tani and Gary recently moved the family to Sechelt where Rose lives in a guest cottage on their property. For her 21st birthday, they let her choose her own cat from the SPCA. Rose took Devon home two weeks ago.
"He's so affectionate and he loves being petted everywhere, even belly rubs and having his armpits scratched," she said.
In the meantime, Rose is doing what she can to reach 110 pounds. At that point, she will have a few more hours in the day unhooked from the feeding tube.
