A TINY DANCER’S SIMPLE DREAMS
Lamitta El-Roz, 6, of Stittsville has cerebral palsy. While her dad helps her ‘dance’ some days, she wants to walk for herself. Her family has hopes a surgery in St. Louis could improve her quality of life.
Lamitta El-Roz loves sports, particularly basketball, but says there are two reasons she can’t play right now: First, there’s snow on the ground outside; and, second, she’s not allowed to play basketball indoors.
A six-year-old with a smile that could almost melt the snow around her Stittsville home, Lamitta neglects to mention that she was born with cerebral palsy after a pregnancy that lasted only 28 weeks. She weighed just over two pounds then, and spent the first 54 days of her life in an incubator. She can’t walk. In fact, she has almost no gross motor skills control, the thing that would let her crawl or throw a ball.
There was some brain damage at birth, explain her parents, Robbie El-Roz and Maya Taleb, that caused the cerebral palsy. Along the way, Lamitta has developed numerous additional medical complications: kidney stones, asthma, visual impairment, acid reflux and, recently, anxiety (when her Grade 1 physical support program class at Centennial Public School learned about Terry Fox, Lamitta started to worry she might lose body parts, a concern heightened when she accidentally swallowed her first baby tooth).
But she knows exactly what she wants.
“I want to walk,” she says. “I want to play with my sister (eightmonth-old Leandra), and I want to help … to help …”
(Here followed a gut-wrenchingly long pause while her brain, busy organizing the next part, was simultaneously challenged by the Pixel Gun 3D game on her iPad in front of her.) “I want to help clean the house.” Help could be on the way. Lamitta’s parents learned two weeks ago that, after looking at all her medical records, Dr. T.S. Park, a specialist in pediatric neurosurgery, believes Lamitta is a good candidate for selective dorsal rhizotomy surgery. It’s a procedure he’s successfully performed thousands of times, and Park has agreed to perform it on her.
Following the operation, in which the sensory nerve fibres that cause spasticity are cut from her spinal cord, Park says that Lamitta’s spasticity will be reduced and her sitting and standing postures, along with her balance and comfort level, will improve. Additionally, her ability to walk using a gait trainer — essentially a walker that supports her weight — will improve. “There is a small chance she will be able to walk using a walker and her upper extremities may improve,” Park adds.
The catch is that Park works out of the St. Louis Children’s Hospital, in Missouri. The procedure isn’t performed in Ontario, and while OHIP claims to cover the procedure, it only does so if the application is accompanied by a letter from a specialist, something that numerous families in Ontario have said they can’t get.
In 2015, one mother in Orillia, Carlene Anderson, said of her difficulty getting a letter signed for her son, Mason: “I cold-called neurosurgeons in Ontario to see and assess Mason. I knew if they were willing, they would say he is a good candidate. I spoke directly on the phone with many of them and they all said they were not qualified to assess Mason for a surgery they did not perform. However, no one performs the surgery in Ontario, so what were we supposed to do?”
David Jensen, spokesman for Ontario’s Ministry of Health and Longterm Care, says the department is aware of these concerns, and that “staff have been in contact with Canadian pediatric neurosurgeons and continue to review the issue.”
Additionally, he notes, there are specialists at spasticity clinics at both McMaster University Medical Centre in Hamilton and Holland-Bloorview Kids Rehabilitation Hospital in Toronto who have recommended SDR for patients. In the past five years, 10 applications for funding for out-of-country SDR surgery have been approved; six have been turned down.
And it’s expensive: The actual surgery, which is the only part of the process that Ontario covers, costs about US$50,000. When you add in accommodation costs, a subsequent orthopedic operation that would be necessary, and the physiotherapy that Lamitta would need afterward, the total comes to between $100,000 and $120,000.
El-Roz is hoping that his letter from the St. Louis Children’s Hospital will convince an Ottawa specialist to support his application, but even at that there’s no guarantee that OHIP will pay for anything. And the clock is ticking. They’ve already agreed to the operation, which will likely take place in the fall.
And so El-Roz and Taleb have launched a GoFundMe campaign to raise $100,000. If OHIP agrees to cover the cost of the operation, El-Roz says he’ll either lower their target amount or, if they’ve already reached it or come close, donate any excess funds to the Ottawa Children’s Treatment Centre.
“We just want to improve her life, to give her some independence,” says Taleb, who was in the process of acquiring her nursing equivalency certificate — she was a nurse in her native Lebanon — when Lamitta was born and has since had to shelve that plan to take care of her daughter. Instead, during the past six years, she’s joined online support groups and done extensive research on cerebral palsy and its treatment, including talking to numerous families whose children have been operated on by Park.
The toll that Lamitta’s condition puts on the family, meanwhile, has been exacting financially, emotionally and logistically. El-Roz, a mortgage adviser, and Taleb went out together without their children for the first time in six years last month, to a Christmas party for his work. The planned dinnerand-comedy-club outing was cut short after just an hour, though, when Leandra’s cries for her parents triggered Lamitta’s anxiety, and their sitter, an educational assistant at Lamitta’s school, had to call the parents back.
Additionally, Lamitta’s inability to support herself or even roll over means she has to be turned in her sleep every hour, with Taleb taking the lion’s share of that nocturnal duty. “Do you see these bags under my eyes?” she asks, only half kidding.
“We don’t get out much,” admits El-Roz. Lamitta loves visiting Funhaven and Cosmic Adventures, but even a family outing to Walmart is a pretty big deal.
“I’m in the process of ordering a special toboggan for her,” El-Roz says. “I’ve never taken her tobogganing. It’s challenging to get out and do things.
“But this surgery will give her the chance to be self-dependent and get out of her wheelchair and live a somewhat normal life. This would mean the world to her.”
Throughout, Lamitta remains positive and smiling. “Do you want to see me dance?” she asks, an exercise that, truth be known, takes more effort on her dad’s part than hers, as Sean Paul’s Cheap Thrills fills the room: “It’s Friday night and it won’t be long till I hit the dance floor, hit the dance floor.”
For more information or to donate, visit gofundme.com and search for “Lamitta.”
This surgery will give her the chance to be self-dependent ... and live a somewhat normal life.