Julie McCrackin and Jamie Rhodes are going the distance to get their young daughter the care she needs.
Sienna Rhodes, 12, will head to Germany with her parents in September to undergo anterior scoliosis correction.
In June, the Orillia girl was diagnosed with adolescent idiopathic scoliosis. The journey to finding out what was wrong began in the winter, when Sienna was taking swimming lessons. Her grandmother noticed one of Sienna’s shoulders was slightly more elevated than the other.
A chiropractor asked Sienna to bend over and touch her toes, and that’s when the curving in her spine became immediately noticeable.
She had an X-ray at Orillia Soldiers’ Memorial Hospital, where a doctor suggested her spine had a 40-degree curve.
She was referred to Toronto’s Hospital for Sick Children, but due to delays as a result of the COVID-19 pandemic, it wasn’t until June 11 that the family saw the X-ray results and Sienna received her diagnosis.
It was revealed her lumbar (lower spine) curve was at almost 70 degrees and her thoracic (upper spine) curve was at nearly 60 degrees.
“We were in shock,” McCrackin said. “I never would’ve guessed that her curves were that bad.”
They were told Sienna should undergo spinal fusion within 12 weeks, but it came with a risk, particularly because of the severity of the curving.
“Our biggest concern was fusing her whole spine down to the L4,” McCrackin said, noting that is the second-lowest vertebra in the spine. “I don’t know how we could've lived with ourselves if we fused her down to the L4 when she’s only 12.”
Sienna’s parents began looking into alternative procedures, including vertebral body tethering. They spoke with four surgeons, all of whom said that option was off the table because of the extent of the curving.
One of the surgeons recommended fusion, but when asked what that would mean for Sienna in the future, her parents were told her spine might have to eventually be fused to her pelvis.
“That was our turning point,” McCrackin said.
Sienna’s parents continued looking for other options and learned about anterior scoliosis correction. However, it isn’t performed in Canada and isn’t covered under OHIP. Surgeons in the United States said they could do the procedure, but it was too costly.
So, the family found a surgeon in Simmerath, Germany, where the procedure will take place Sept. 8.
It’s still going to be a financial burden, though. Factoring in the surgery, flights, accommodations and other costs, the family is looking at an estimated $100,000.
That’s why friends started a GoFundMe campaign — which can be found here — with the goal of raising $35,000. As of Thursday evening, almost $28,000 had been donated.
“We have no words to express how thankful we are,” McCrackin said. “We did not think that we would be at this point four days from the time (the campaign started).”
Sienna, too, is grateful.
“Sienna’s cup is overflowing with joy at the kindness people have shown her and we couldn’t begin to explain the strength this will give her to recover from this surgery,” her mom said.
Sienna has been a champ throughout the entire ordeal, McCrackin added.
“She’s very positive about everything. She says, ‘Everything will be fine,’” she said. “It helps us try to think positively as well. It’s a relief.”
Sienna is aware of the money that’s been donated and the well wishes that have been sent her way. Her response: “Oh, Mommy, we’ll have to make a video of me thanking everyone.’”
Navigating the health-care system during the time of COVID-19 hasn’t been easy, and the idea of flying during the pandemic is “uncomfortable,” McCrackin said.
They have been taking extra precautions to ensure they are healthy enough to fly in September and they take comfort in knowing many in Germany have been following the guidelines and the number of cases there has been relatively low.
They will remain in Germany for a few weeks after the procedure, and Sienna is facing a long recovery. She won’t be able to be too active for at least six weeks and she’ll undergo physiotherapy for months.
It will all be worth it, they say, if it means she can lead a healthy life into the future.
“We don’t expect a straight spine. We just hope for an improvement and no pain,” McCrackin said, adding the goal is to improve both curves by 50 per cent.
She also hopes anterior scoliosis correction will eventually be performed in Canada and covered under OHIP.
“It’s really not that hard to screen and, unfortunately, we don’t do it,” she said, adding, if it were available, her daughter’s condition could’ve been discovered earlier.
“I do really hope that this type of surgery will be available in Canada in the future. I do believe it will be, but it’s a slow process.”
