Stephanie Toronto, ON
Fifteen-year-old Stephanie has been a patient at Toronto’s SickKids Hospital since she was one hour old. She was born with an omphalocele, meaning that her organs grew on the outside of her body.
The doctors at SickKids Hospital were able to correct Stephanie’s omphalocele, but because of the nature of her condition, there were complications. “One doctor said if you look in the textbook of how things were not supposed to go, my picture would be there,” says Stephanie.
Stephanie has gastroparesis – meaning her stomach is paralyzed – pseudo bowel obstruction syndrome, and intestinal failure. “I have spent most of my life living in the hospital. Over the years, I have had 16 major surgeries and hundreds of invasive procedures,” says Stephanie. Stephanie has been dependent on an IV for nutrition, which has resulted in her developing eight blood clots over the years.
Stephanie says her greatest difficulty is severe chronic pain – she takes more than 23 medications some days. “Many things like eating food – which I love – taking a shower, and swimming are things that most people take for granted, but for me these are often a luxury – yes, eating is a luxury!”
Stephanie’s team of doctors at SickKids decided to send Stephanie to Boston Children’s Hospital for treatment of her chronic pain. “SickKids worked very hard but exhausted all of their options and this was the only hope for me to live a better life,” she says.
"I have spent most of my life living in the hospital... Hope Air is responsible for helping win my fight with chronic pain."
Stephanie’s parents were unsure how they would find the funds to cover the airfare to Boston for Stephanie’s treatment. Fortunately, the family heard about Hope Air. “First Hope Air flew us there for the assessment and then they flew us there for the long-awaited program,” Stephanie says.
Stephanie graduated from the Mayo Clinic Pediatric Pain Rehabilitation program after five intense weeks of treatment. “Since the program, I have been able to stop taking three of my pain medications, and I have extended my school day by one hour. I have gotten stronger and can manage everyday life better.”
Stephanie is grateful for Hope Air’s support in getting her to the treatment that has helped ease some of her pain. “Hope Air is responsible for helping win my fight with chronic pain. My mom says I am a hero but, Hope Air is part of my extended family of heroes.”