Lamitta El-Roz loves comic book super heroes — especially Spiderman.
When asked what super powers she'd like to possess, she doesn't hesitate.
"I'd like to have flying powers."
But her down-to-earth wishes are to dance, run and play Nerf gun games like other kids her age in the neighbourhood.
Her parents are hoping surgery next month will allow their six-year-old daughter — born with spastic cerebral palsy — to at least sit up on her own. Their ultimate hope is for her to take a few steps with the help of a walker.
"I want to walk and that will be amazing," she says.
But mother Maya Taleb and father Robbie El-Roz have been told the operation, which will be done in the United States at a cost of about $46,000 US, won't be paid for by OHIP.
While the province says it has funded out of country selective dorsal rhizotomy surgery (DRS) for patients like Lamitta in the past, she needs a letter of recommendation from a specialist in Ontario. In July, a neurosurgeon in Hamilton wouldn't give them his endorsement. The specialist told the family that without her being mobile, he couldn't recommend the province pay for Lamitta's surgery.
The family, however, is set to go ahead with the surgery September 9, thanks to fundraising efforts that brought in $85,000. But how they will pay for post operative costs — which Robbie pegs at about $140,000 — is, for now, up in the air. He says his workplace insurance only pays for $1,200 of physiotherapy a year.
Living with constant pain
After being born months premature, Lamitta sustained brain damage that left her with cerebral palsy. She lacks gross motor skill control that she needs to hold a pencil or crawl — but she can feed herself and manipulate a computer tablet while strapped in a chair. The cerebral palsy has left her with painful muscle tightness that causes her limbs to constrict.
"She has so much pain, especially at night. She can't roll over. She's so tense she can't even move her legs and she screams and cries over the pain," says her mother.
The St. Louis Children's Hospital in Missouri, which has performed the DRS surgery thousands of times over the last 25 years, says she's a strong candidate for the procedure.
The American specialist who helped pioneer the surgery, Dr. T.S. Park, reviewed videos as well as an MRI and ultrsound tests sent to him by the family. He replied with an enthusiastic letter in January saying he'd perform the procedure with the expectation she'd experience several improvements.
"Her spasticity will be permanently reduced and her sitting and standing posture will also improve," and he added "we feel that Lamitta will improve her walking with a gait trainer and there is a small chance she will be able to walk using a walker."
Park concludes in his letter: "Lamitta is a good candidate for the rhizotomy surgery and that the permanent reduction in abnormal muscle tone will help her significantly — we strongly recommend that she have the surgery."
For now the family is focussed on Lamitta's intensive two hours of physiotherapy each day to strength her back muscles before the surgery — but finding all the money needed weighs on them.
"Yes, I've had some sleepless nights wondering about the money," said Robbie, who adds more fundraising is planned. "We'll just roll with it."
For its part the Ontario Ministry of Health won't comment on Lamitta's case, citing privacy concerns.
But in an email statement it said, "Because the evidence shows that SDR is only beneficial to a small number of children with cerebral palsy, generally SDR patients are assessed through one of Ontario's spasticity clinics to determine if they are suitable candidates for SDR. Ontario physicians review funding applications on a case-by-case basis as the clinical circumstances of each patient are unique, even for patients with the same diagnosis."
The ministry said it has received 19 applications since October 2014 for out-of-country funding for SDR and 12 have been approved.
"There has to be a treatment — she wants to walk and she will."
Lamitta's parents say they're disappointed OHIP won't pay for the surgery, despite getting the green light from the St. Louis Children's Hospital, but they aren't deterred.
"We need to give her a better life in the future. We don't want her to be in her wheelchair for her whole life if there is a chance to be like other kids," said Maya as she broke down in tears. "There has to be a treatment — she wants to walk and she will."
Coincidentally, last month, Health Quality Ontario, a provincial agency which advises the government on how to improve healthcare, assessed 84 studies, including clinical trials, on the effectiveness and safety of selective dorsal rhizotomy surgery.
The report concluded the procedure along with physical therapy "reduces lower-limb spasticity in children with spastic cerebral palsy and significantly improves their gross motor function and functional independence."
As a result Health Quality Ontario is recommending, when appropriate, the province pay for the surgery.