A Pelham family has established a GoFundMe campaign to help raise $250,000 to pay for their toddler’s restorative ear surgery, correcting a birth defect that left him deaf in one ear.
“Not life-threatening, but life-altering,” said Amanda Gervason, describing the nature of her son Emmett’s impending ear surgery.
Emmett was born with a congenital deformity called Pediatric Microtia, which statistically occurs about once in every 10,000 births. He requires a full reconstruction of his right external ear, as well as the ear canal. He has a condition called Atresia, which is the absence of closure within the external canal, affecting the bones that enable hearing.
Emmett cannot identify the direction of sounds, has problems dealing with loud environments and has a difficult time focusing on conversations. A specialized teacher has been working with him since he was six months old. He wears a BAHA (bone-anchored hearing aid) to help him hear. His parents have introduced some basic sign language to help him communicate his needs.
“Surgery will undoubtedly result in a return to relative normalcy for Emmy,” said his dad Aaron. “He will be able to hear with both ears, although not at 100 percent efficiency.”
The family is hoping to travel to Palo Alto, California in June. A surgeon there can restore some or all of Emmett’s hearing and cosmetically resculpt his ear to a normal shape. His left ear is fully functional.
“It’s not just about the appearance of his ear, but the way his conductive hearing loss affects his speech, his language, his ability to learn, and ultimately his mental health,” said Amanda, who refers to her son as “Emmy.”
Amanda has been in contact with a group of other moms with kids who have Pediatric Microtia, and said that the provincial government has denied all of their requests for funding under OHIP.
She said she contacted Niagara West MPP Sam Oosterhoff, who offered to reach out to the Ministry of Health to advocate for Emmett’s surgery. Unfortunately, the Ontario health system is unwilling to cover the procedure, considering it cosmetic surgery.
The Gevrasons say their all-in expenses will be approximately $250,000. Should fundraising eclipse that target, they plan to donate the money to help another family in similar need. Neither Aaron nor Amanda have health coverage through their employment that would assist with the costs.
“We were originally referred to Sick Kids Hospital in Toronto, but they were not prepared to operate on Emmy until he was 10,” said Amanda.
A mother in Binbrook, whose own child had the reconstructive surgery, convinced Amanda that the surgeons in California were the best option.
Emmett’s surgery under anesthesia will take eight hours, said Amanda. A new polyethylene implant, a reversed replica of his left ear, will be grafted onto his skull, using his own skin to anchor it in place.
“We have to stay in California for six to eight weeks after the surgery, because they need to see Emmy weekly for follow-up tests, and to make sure infection doesn’t set in.”
They will travel without 14-month-old Alora, who will stay with family.
Amanda is a nurse with the Niagara Health System, and her husband Aaron is a custodian with the District School Board of Niagara. The couple met in kindergarten at Senator Gibson elementary school in Beamsville. They moved from Smithville to a rural property in North Pelham a little over a year ago with their two children. Emmett, 2, has a sister, Alora, who is a year younger. He will turn three in June, around the time the surgery could be conducted.
The Gervasons were resistant to asking for help pay the $250,000 price tag, but friends, family members, and co-workers encouraged them to proceed with the surgery and set up a GoFundMe account.
“I think the most difficult part was admitting to ourselves that we can’t do this on our own,” said Amanda. “It’s not about us… it’s about our little boy, and what’s best for him. We will do anything for our son.”
So far $25,000 has been raised for Emmett’s ear surgery via GoFundMe. The page is here: https://gf.me/v/c/tpkk/an-ear-for-emmy