Saanich’s Madeleine Murray underwent a successful first surgery in Florida last weekend on her journey to recover from a collapsed neck.
The nine-year-old is in a highly unique situation, as she suffers from arthrogryposis, and has lived with a collapsed neck since June. Her family flew her to the Paley Institute in Palm Beach, Fla., to undergo a series of surgeries and treatments. She had her first surgery on Oct. 14 to install a halo apparatus that will slowly bring her head up off her chest and raise her collapsed neck ahead of another surgery next month.
Murray’s parents, Dan and Laura, are expected to pay for a crucial second surgery next week but are short of the funds.
“I am trying to figure out what to do, we are in the process of re-appealing to MSP, but that takes time,” Dan said. “Madeleine is stuck in the middle.”
Arthrogryposis is most commonly known as clubfoot. But in Madeleine’s extremely rare case, it affects her core, hips, back and neck.
As of Wednesday, the Murrays had raised over $154,000 in 25 days through a Gofundme page.
The Murrays already remortgaged their Glanford area home, and cashed out their life insurance policies, to pay for the initial halo surgery, traction and therapy. They are now relying on community charity to cover the estimated $500,000 in additional costs for a second surgery, therapy and rehabilitation at the institute. The operation has not been sanctioned by B.C.’s medical services provider, as neither of her two former surgeons are in support of the family going to the United States to see a specialist, said Dan.
However, Dan was told by the surgeon specialist assigned to Madeleine that he'd never seen a case like it before. However, the doctor that is working on Madeleine at the Paley Institute, Dave Feldman, is confident that he can resolve the issue as focuses on this type of affliction, Dan said.
“She is in that halo and I [can’t help but] wonder if that was all for not as she cannot keep it on more than a month or so,” Dan said. “Once it comes off she will collapse again if surgery isn’t done [immediately]. We are keeping positive and praying that funding will come soon.”
In the meantime, Madeleine’s infectious giggle has returned as she believes she is on track to recover from the collapsed neck, Dan said.
“I feel bad for her because she has such hope right now thinking she is going to be fixed permanently. Madeleine is recovering nicely and is getting used to her halo-like apparatus that she is wearing,” Dan said.
While Madeleine wears the device she does have some movement and is not bed ridden. She is getting used to sleeping in it, too, Dan said.
“Her energy has been very good due to a good sleep. She’ll be able to go in the pool to exercise the lower half of her body. We are keeping positive and praying.”
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.