TORONTO -- An Ontario family is asking for help raising money to pay for a costly surgery that could give their young son close to full hearing and the chance of living a “normal life.”
Emmett Gervason was born on June 26, 2018 to Ridgeville, Ont. parents Aaron and Amanda. Speaking to CTV News Toronto, Amanda Gervason explained that while her labour with Emmett was “awful,” the pregnancy was nearly flawless.
The parents only realized something was wrong after the nurses were finished cleaning Emmett up.
“’There’s something a little different about him,’” she recalled the nurses saying.
As an emergency nurse herself, Gervason said she was anxious for more information about Emmett’s condition, but that answers were scarce.
“As a first-time parent, the pit of your stomach falls to your feet and you start questioning literally everything: yourself, you question everything you did, you question how this could happen because nobody knows a lick of information about what this is,” she said.
The two-year-old was later diagnosed with stage 3 microtia, a condition which is found in one in roughly 10,000 births and results in the ear not forming properly. Additionally, Emmett was also diagnosed with Atresia, which affects his ability to hear on his right side.
Gervason says that even with a bone-anchored hearing aid (BAHA), Emmett’s language and communication skills have started to lack and he appears to be missing key milestones in his developmental growth.
To make matters worse, a teacher and a speech therapist who had been assisting Emmett have been sidelined due to public health restrictions imposed due to COVID-19.
“It has been a struggle,” Gervason said. “We have only been back to his speech therapist once in the last year and that was just when they started to relax things.”
Motivated to find a solution to her son’s ailment, Gervason said she began investigating possible treatment options.
She said she discovered a rib graft surgery that is available in Canada called the Nagata Auricular Reconstruction Method.
However, according to Gervason, Emmett would likely need multiple invasive operations, which can’t begin until he turns 10.
After making calls to her local MPP for help, working with local microtia support groups, and tirelessly searching for answers, Gervason said she found a treatment called the Combined Atresia Microtia (CAM) surgery, which would only require Emmett to go under the knife one time but the procedure is not available in Canada.
Moreover, CAM surgery is considered by the Ontario Ministry of Health to be cosmetic in nature, meaning that OHIP doesn’t cover any of the costs, Gervason said.
The family researched who could preform the surgery and found the California Ear Institute. They said the operation carries a price tag of $250,000, including required expenses for COVID-19 protocols upon arrival and return.
Frustrated, but determined to not give up because of costs, Gervason said she apprehensively turned to GoFundMe for help in raising the funds, with hopes of having a surgery scheduled for July, just after Emmett's third birthday.
In an email to CTV News Toronto, Dr. Joe Roberson, one of two surgeons who will be performing the operation, said that while the surgery is complex, “reliable and excellent results can be achieved, frequently returning hearing function to the normal range with a stable and pleasing result.”
“In this surgery that we have pioneered, both procedures can be done at the same time in children as young as 3 years of age,” he said.
As of Thursday, more than $60,000 has been raised from 310 donors for Emmett’s surgery.
If the goal is met and they have money leftover, Gervason said she plans to give back to another parent whose child is experiencing microtia or use the extra funds to hire a lawyer to “fight for a change.”
“Some of the other moms that have gone through this OHIP process, they went through the appeals process and they were told ‘your child has hearing on one side so they can function in life fine with that so we’re going to deny you for that.’”
“It’s really sad.”
CTV News Toronto contacted Ontario's Ministry of Health for a comment on Emmett's situation, but it has yet to provide one.
