A Saanich couple is taking a ‘leap of faith’ this week in accompanying their nine-year-old daughter to Florida for a life-saving surgery.
Since June, Madeleine Murray, who suffers from a rare form of arthrogryposis, has lived with a collapsed neck. Her chin rests permanently on her chest, making it difficult to eat, breathe, and to look forward or up. The situation has worn heavily on Madeleine, through her self-esteem, and for her family.
Madeleine’s already had 10 surgeries in her young life, four of them failed, as she lacks the ability to recover from surgery in ways other children can.
Part of that is why the family is going out of country for the care and expertise they believe gives Madeleine the best chance going forward. It’s going to cost upwards of $500,000, much of which the parents are unsure how they will obtain.
In the meantime, the family has been told the longer Madeleine stays in her current position the more permanent damage will occur. Madeleine goes to school for half days, then she comes home to rest her back and neck. There is also a potential for choking, though everything is fine so far, said her father Dan.
“Not every child fits in the exact puzzle of what’s offered medically in B.C. or Canada,” said Dan. “Any parent would do the same for their child when they’re desperate.”
Madeleine will undergo a pre-surgery on Oct. 14 for “halo traction” and rehab. That surgery is already paid for. But the following surgery and rehab, to correct the spine, has yet to be booked, Dan said.
To pay for the first surgery, Dan and Laura remortgaged their house in the Marigold neighbourhood and cashed in their life insurance policies. They’ve also set up a $400,000 GoFundMe page, as they anticipate it will cost that much for the second surgery, rehab and the cost of living, which factors in the lost wages as Dan misses work.
“It’s a leap of faith,” Dan said. “We’ll figure this out. I know my daughter will give back one day to other kids.”
The specialist Madeleine is seeing is Dr. David Feldman, a surgeon in the Paley Institute of West Palm Beach, Fla., with proven experience in arthrogryposis.
Madeleine’s first five years were challenging and full of surgeries, many followed by six to eight weeks in a cast. But life was easier, and surgery-free, from the age of six to eight years old. At that time she could ride her bike, jump on the trampoline and perform other activities, which she can no longer do.
“We just want her back to being that happy girl she was [last year],” Dan said.
In October 2015, Madeleine had surgery to manage a developing curvature of the spine. She had growing rods inserted into her neck, which have the ability to extend as the child grows. But in Madeleine’s case, her neck began to lose strength. By December, her family could see the rods were poking against her skin and that her head and neck were drooping.
By January, Dan brought his family’s concerns about the situation to Madeleine’s medical team.
In February the rods were extended, then again in April. It was painful for Madeleine, as her dropping head continued to worsen. By June, the specialist removed the rods altogether.
“The last surgery crippled her, and it’s my duty as a father to get her the best care possible. She can’t keep going through surgery after surgery, especially in the spine. You only get so many shots at this.”
Arthrogryposis is most commonly known as clubfoot. But in Madeleine’s extremely rare case, the arthrogryposis affects her core, hips, back and neck.
The Murrays are now hoping B.C.’s Medical Services Plan will pay for some of the costs but it will be difficult, Dan said, as both of Madeleine’s B.C. specialists who performed surgery on Madeleine are not in support.
However, both of the GPs that have worked with Madeleine over the course of her life are in support. One gave Dan a cheque for $1,000 and said, “Get out of here and get this surgery,” Dan said.
Before she was six years old, Madeleine underwent two failed hip operations, surgeries for a hernia, a broken leg and hamstring extensions.
“Psychologically I can’t give my child back to the same [Canadian] surgeon,” Dan said. “When I flew back from [my consultation] in Florida I cried the whole way. The people beside me asked if I was afraid of flying. I said ‘No, I’m just happy because I believe I’ve found the proper help for my daughter.’”
See more about Madeleine’s story online at thelittlegirlintheredjacket.ca/home, or visit gofundme.com/MadeleinesSurgery. Donations can also be made at the Scotiabank, 2669 Douglas St., under the account name, The little girl in the red jacket.