Madeleine Murray, her doctor says, is a little girl with a big problem.
The unfortunate combination of a congenital disease and ineffective surgery caused the 10-year-old’s spine to collapse last year.
That left Madeleine, a spunky, bright-eyed cutie from western Canada, with her head permanently slumped on her chest.
"So imagine trying to look at the world that way or trying to eat or take a deep breath," said Dr. David Feldman of the Paley Institute at St. Mary’s Medical Center. "It’s very difficult."
Or so was the case until Feldman stepped in and performed two surgeries that have left Madeleine seeing, eating and breathing like any kid. After about five consecutive months of hospitalizations, Madeleine is expected to get on a plane with her family at the beginning of March and head back to Victoria, British Columbia, to resume classes at her elementary school.
"I just hope that Madeleine can have some peace, get a break in life and have a chance at a somewhat normal childhood," said Dan Murray, her father.
VIDEO: Madeline Murray and her family talk about her surgery at St. Mary’s
By any definition, her early life has been anything but normal.
Madeleine was born with arthrogryposis, a condition in which the muscles around the body’s joints become weak, keeping them from functioning normally and causing them to lock in a position. She then developed scoliosis — a sideways curvature of the spine — and life became a series of hospital visits and operating rooms.
Before she turned 10, Madeleine had undergone 11 surgeries on her hips and spine.
Two procedures — including an 11-hour marathon — performed in Canada to insert rods and stabilize Madeleine’s neck failed and left her head wedged into her collarbone.
A hunchback’s curvature, Feldman points out, is caused by the spine bending forward 60 degrees. Madeleine’s spine curved 160 degrees.
"The spine above the rod just fell right over," Feldman said. "You can barely eat when you are like that. She could have had lung problems. There was real risk to her health."
Doctors in Canada told Madeleine’s parents their daughter needed another surgery to fuse her spine in place. The Murrays balked and refused further treatment.
Doing so has come at great financial cost for the Murrays.
The surgeons who oversaw Madeleine’s care in Canada refused to sign off on a recommendation that would allow her to receive treatment outside the country, the Murrays said.
That’s left Dan Murray and his wife, Laura, holding the financial bag.
The Murrays, who own a small business in Victoria, have re-mortgaged their home, cashed out their life insurance policies, received a sizable loan from a friend and contributions from many, but still face huge bills. A GoFundMe account aimed at paying Madeleine’s post-surgery medical costs had raised about $10,500 as of Thursday.
Dan Murray said he is "one step from going under" but has zero regret.
"Any parent facing this would have done the same," said Murray, whose family includes 13-year-old son Sutherland. "We did not have time to wait for a miracle in Canada."
After extensive research, the Murrays found Feldman, whose specialty is treating severe deformities of the spine.
"The family was scared," Feldman said. "The father felt like he was trying to save her life, which is true. This beautiful little girl that had been through way too much."
Madeleine underwent two surgeries at St. Mary’s, including one Nov. 22 in which Feldman removed a part of her upper vertebrae and inserted "rods, screws, wires and everything else." Madeleine was in intensive care for 38 days.
"Madeleine has been very mature about this," her father said. "I can count only two or three times where she’s had a complete meltdown, but that’s been very rare. It’s almost like she’s come into this life with a pre-determined journey and she’s embraced it. We can learn from this child."
For the past couple of months, Madeleine has received therapy at the Paley Institute and lived with her mom at Quantum House. She gets around the hospital in a walker, but her eyes light up when her father mentions walking on the beach and dipping her toes in the ocean before they leave for Canada.
Madeleine zipped off the names off several new friends she’s made during her long hospital stay, but admits she can’t wait to get back home to see her brother, pals and pets and go back to school. Her condition caused Madeleine to repeat second grade and made it impossible for her to attend third grade.
"She’s a very witty child," Dan Murray said. "She’ll catch up."
Feldman said that Madeleine’s long-term prognosis is "quite good."
"Madeleine is a great little kid — great energy, very intelligent and verbal, with a great spirit," Feldman said. "Absolutely adorable. Just a normal little girl with a big problem."