Vaughan family continues fight for life-changing surgery

Yorkregion.com
July 31, 2015
By Adam Martin-Robbins

Alesandro Ciampa has one wish: to walk unaided.

And the seven-year-old’s family and friends are doing their utmost to make it reality.

To that end, they’ve launched an online fundraising campaign (www.gofundme.com/WalkWithAlesandro), organized garage sales and are planning a community barbecue in late August.

It’s all aimed at raising $150,000 to cover the cost of a surgical procedure offered in the United States that has, by all accounts, worked wonders for other children like him as well as the physiotherapy that follows.

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

As he grows, his muscles won’t be able to keep up, leading to irreversible bone deformities, explained his mother, Shana Ciampa.

Alesandro hasn’t reached that point yet, but his hips are starting to dislocate and his mobility is regressing.

Currently, he uses a walker to get around and needs help with everything from putting on his shoes and brushing his teeth to taking a bath.

Getting him ready to start each day takes hours, Shana said.

“He’s very stiff in the morning so I have to massage him and then I have to do a series of stretches. Then I have to manoeuvre him and get his orthopedic shoes or braces,” she explained. “Then we somehow shuffle to the bathroom and our bathroom routine is a couple of hours because he can’t stand independently.”

Instead of spending his time playing, like other kids his age, Alesandro must undergo a couple of hours of physiotherapy every day, she added.

Wanting to give her son a life of greater independence and spare him the multiple surgeries he’d otherwise face to relieve pain caused by the strain on his bones, Shana and her husband began researching a spinal surgery called selective dorsal rhizotomy (SDR), offered by Dr. T.S. Park at St. Louis Children’s Hospital.

The procedure involves removing a portion of one vertebra, electronically stimulating the nerves to see which ones are causing muscle tightness and then cutting them, Shana said.
Park has performed more than 3,000 surgeries during the past 25 years with remarkable results, she added.

Alesandro was assessed as a candidate for the surgery earlier this year.

Park approved him for the surgery and said it would enable the youngster to “walk independently in all environments”.

The challenge facing the Ciampa family now is finding the money to cover the surgery and the intensive physiotherapy required afterward.

A different version of the surgery used to be offered in Ontario, but not any longer.

OHIP still lists the surgery as eligible for coverage, so long as a qualified neurosurgeon from Ontario performs an assessment of the child and recommends the surgery as beneficial, Shana said.

The trouble is, the Ciampas haven’t been able to find an Ontario physician deemed “clinically competent” who will agree to do an assessment and provide a recommendation.

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

And, she says, they can’t get a clear explanation as to why.

It appears there’s been a recent change in opinion about the benefits of the surgery, Shana says.

When the Vaughan Citizen contacted McMaster Children’s Hospital, 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.

Shana says they’ve already explored this avenue with doctors at McMaster and were told the specialists in the clinic won’t recommend SDR.

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.”

Stephanie Visentin, whose son Aidan underwent SDR in 2014, has been advocating for other Ontario families who want the surgery for their children.

“(Aidan) was a different child after the surgery,” she said, noting that prior to undergoing SDR he used a wheelchair to get around.

“It was nothing short of a miracle,” she said, adding the Ciampas aren’t alone in their struggle to get an assessment and recommendation from a doctor so they can get OHIP coverage.
Alesandro is slated to have the surgery in November and the Ciampas aren’t giving up on trying to get OHIP coverage just yet.

This week, Shana appealed directly to Health Minister Dr. Eric Hoskins to intervene, but she’s not optimistic it will happen.

In the meantime, they’re forging ahead with planned fundraising initiatives.

A massive garage sale takes place Saturday, Aug. 8 from 8 a.m. to 5 p.m. at 16 Willis Rd. in Woodbridge.

Then, on Saturday, Aug. 29, they’re throwing a community barbecue at Doctors McLean District Park (8100 Islington Ave.), starting at 11 a.m. The event will feature food, entertainment, raffles and an auction.

As for Alesandro, he’s looking forward to being able to walk on his own one day.

“After the surgery you have to stay in St. Louis ... and get physiotherapy. Then, finally, you get to back to where your home is and then you can walk by yourself,” he said. “It will feel better.”

To find out more about the fundraising initiatives, visit alesandroswishtowalk.com