Family says cerebral palsy surgery not available in Ontario is success in U.S.
TORONTO — Seven-year-old Davi Boucinha’s family is overjoyed at his progress. The little boy, who has cerebral palsy, underwent surgery in the U.S. to help him walk better nine weeks ago.
His mother watches every step Davi takes, with the help of a walker and his physiotherapist, with pride.
“It’s overwhelming because for so long we dreamed of this, we dreamed Davi would be able to have movements like this,” said Reena Jain.
Global News started covering Davi’s story in July. His family was raising over $100,000 for specialized Selective Dorsal Rhizotomy surgery in the U.S., a surgery that isn’t performed in Ontario.
In SDR surgery, sensory nerves which are contributing to spasticity, the tightening of the muscles, are cut.
Davi had the surgery in St. Louis nine weeks ago and in the short time since, he has been improving daily.
He says now that he can keep his legs straight and that it’s easier to walk, “Because I don’t cross anymore,” said Davi.
His physiotherapist said Davi couldn’t control his limbs independently before the surgery and he’s had great improvement since.
“He can do it now, he can control his movements. It’s unbelievable. It’s night and day, 10 weeks ago, I didn’t dream this was possible,” said Jo-Anne Weltman.
SDR surgery has been controversial. Although it is an OHIP insured service, families have been telling Global News for months they can’t get an Ontario surgeon to sign the papers they need to get coverage.
The reasons the specialists won’t sign are not clear. One family’s appeal hearing is currently underway.
“I keep calling it a trial because that’s what I feel like I’m in. It’s just too sad that the children aren’t being put first,” said Shana Ciampa, who is trying to get funding for her son Alesandro.
“The children are being caught in a web and bureaucracy and politics.”
Meanwhile, Davi’s mom said he is living proof the surgery should be covered.
“It is life-changing. I think the best of it is that Davi is happy and he recognizes the changes in his body,” said Jain.
Every day Davi is testing new limits.
“I’m getting stronger,” he said.
© 2015 Shaw Media