Vaughan family seeking Steps for Sofia

Yorkregion.com
April 7, 2016
By Adam Martin-Robbins

Sofia Saverino sums up how she feels about the prospect of walking independently in just one word: “happy”.

Her parents, Giulia and Ugo, are doing their utmost to make that happen, but they need help from the community.

After all, they’re looking to raise about $150,000 so their sweet-natured 10-year-old daughter can undergo a potentially life-altering surgical procedure known as Selective Dorsal Rhizotomy (SDR), performed by Dr. T.S. Park at St. Louis Children’s Hospital in the United States.

Sofia has spastic diplegia, a form of cerebral palsy where the nerves constantly send messages to the muscles telling them to contract.

She has difficulty walking on her own and must use a wheelchair, a walker or have support from her parents, to get around.

But SDR is expected to allow her to walk independently indoors and with canes outdoors, Giulia said.

“(Dr. Park) seems to think that she’ll do well with (the surgery),” she said. “He highly recommended it so that she doesn’t get further muscle damage and be affected her whole life by the spasticity.”

The surgery, basically, involves removing a portion of one vertebra, electronically stimulating the nerves to see which ones are causing muscle tightness then cutting them.

The Saverinos thought long and hard before deciding to go ahead with the procedure.

“We’ve been playing with this option for a longtime,” Giulia said. “It was a hard decision, it’s been sitting on our shoulders for a long time. Is it going to hurt or child or is it going to help our child? You have that question.”

After researching the procedure and Dr. Park’s credentials - he’s reportedly performed more than 3,000 surgeries during the past 25 years with remarkable results - they were convinced it was the route to go.

But, like other Ontario families with children who have spastic diplegia, the Saverinos encountered a roadblock when they tried to get OHIP pay for the surgery.

OHIP lists SDR as eligible for coverage so long as a qualified neurosurgeon from Ontario assesses the child and recommends it as beneficial.

But the Saverinos couldn’t get a physician to sign off on a recommendation for the surgery.

It’s similar to what happened with Alesandro Ciampa, whose story The Vaughan Citizen published last July.

His parents approached three pediatric neurosurgeons - two at McMaster Children’s Hospital and one at SickKids Hospital - qualified to do an assessment, but none of them would agree to see Alesandro, despite the fact they’d done it for others.

And the family couldn’t get any clear answers as to why.

When The Citizen contacted McMaster Children’s Hospital last summer, a hospital spokesperson said:

“McMaster Children’s Hospital was receiving a number of requests for SDR directly to its neurosurgeons earlier this year. During that time the hospital paused to reassess how these should be handled. We have determined the best care can be provided by assessing and evaluating through the Spasticity Clinic.”

Doctors at the clinic will then decide the best course of treatment, which could include SDR, the spokesperson said.

 A spokesperson at SickKids, meanwhile, had this to say:

“SickKids empathizes with parents who have children with cerebral palsy and understand that they would want to do everything possible to improve their children’s quality of life, particularly if a single operation and not a series of treatments could bring lasting improvement. However, SickKids no longer performs this surgery as there are many unanswered questions about who will best respond to SDR, and what the long-term benefits and side effects are.”

The spokesperson went on the say that “our research to date examining long-term effects of this procedure indicates that SDR does not provide any appreciable benefit beyond standard orthopaedic surgery.”

Neurosurgeons and orthopaedic surgeons at the hospital are “working with colleagues in the U.S. on a proposal for a clinical trial that would compare treatment options, including SDR, for patients with cerebral palsy.”

The Saverinos got a different answer from the neurosurgeon who assessed Sofia, but wouldn’t sign off on the surgery.

“He said that they were investigating further pharmaceutical products that could help the children,” Giulia said.

The Saverinos are determined to give Sofia a life of greater independence, so they’re pushing ahead with efforts to raise the money to pay for SDR so she can walk, run and dance ... and “be able to play with her friends.”

They’ve started a Go Fund Me campaign, www.gofundme.com/SofiaSteps

To date, more than $6,000 has been raised.

And they’re holding a fundraising dinner and dance Friday, May 20 - Sofia’s birthday - starting at 6 p.m. at Da Vinci Banquet Hall, 5732 Hwy. 7, featuring a reception, dinner, door prizes, a raffle and a silent auction.

They were inspired by how the community rallied to support the Ciampas so Alesandro could get the surgery in November.

“People are reaching out to us in the same (as they did with Alesandro),” Giulia said. “We’ve spoken to the Rotary Club and the Kleinburg Leos, they helped him, and they were offering suggestions to us about what to do because it’s such a big, daunting task.”