MARS HILL, Maine — Three-year-old Bobbi Guerrette dreams of having her ears pierced so that she can wear butterfly earrings just like her sister.
Only one thing stands in her way: Bobbi doesn’t have ears.
The daughter of Ryan and Jamie Guerrette, Bobbi was born with bilateral microtia with atresia. The condition is evident at birth and essentially means she was born without ears.
“Doctors told us that this is rare, and that our child is the only child in The County with this condition,” Jamie Guerrette said Tuesday. “When she was born, we were basically told, ‘Your daughter has bilateral microtia with atresia. Google it.’”
The good news is that the obstacle to Bobbi’s wish to wear earrings can be overcome through surgery, and residents of Aroostook County and beyond are backing the Guerrettes’ efforts to make it happen.
Jamie Guerrette said she and her husband set out to learn as much as possible about the condition. In Bobbi’s case, one of her ears isn’t open and the other is just a skin tag that doesn’t function.
At this point, the 3-year-old can hear normally as long as she is wearing her bone-anchored hearing aid, which is on a band strapped around her head.
But ears do more than just help hearing. Jamie Guerrette said that since her daughter doesn’t have ears, she not only can’t hear normally, she also can’t wear glasses — or have her ears pierced. She can’t swim or tumble, stand on her head or take gymnastics classes without damaging the hearing aid.
Without ears, she can’t be as normal a child as she wants to be.
The Guerrettes, who also are parents to 5-year-old Carly, have discovered there is a surgery that can help Bobbi. During the surgery, physicians create ears, ear canals and eardrums.
The cost of the operation, however, is a major factor.
“The surgery will take place at the California Ear Institute,” Jamie Guerrette said. “It will be a one-day surgery for each ear. The cost of each surgery is $45,000, so it is going to cost us close to $100,000 to have both ears done.”
After the surgeries, Bobbi will be able to hear normally without assistance.
The Guerrettes have health insurance, but it will not pay for the full cost of both surgeries or help them with expenses incurred in getting to and from California and remaining there while Bobbi undergoes treatment. Guerrette estimated that insurance would pay for 70 percent of the cost, but since the institute does not bill insurance, the family must pay for the procedures upfront.
“We need to have the $45,000 upfront for each surgery because that it is a requirement of the California Ear Institute,” she said. “They don’t bill insurance companies. They help you fill out the paperwork, but they do not do the billing.”
After learning about the surgery in late October, family and friends started holding fundraisers and selling T-shirts. So far, those efforts have generated more than $6,000. Numerous fundraisers, including a dinner and auction, are planned for the near future.
“The community has been very generous and supportive,” said Guerrette. “Our goal is to have our daughter have two working ears before she enters school.”
Guerrette admitted it is unlikely that fundraisers will generate enough money to pay for both surgeries.
“If it did and we have any extra money left over, we would definitely pay it forward,” she said. “We would reimburse people who helped us or use it to help other children with this condition.”
The family initially set up an e-mail address and Facebook page as part of the effort. They experienced a setback last week when someone hacked into both accounts and changed the passwords. No money was lost, but the family had to scramble to set up new accounts.
Guerrette said that Bobbi knows she is going to have the surgery.
“She is looking forward to it, and she wants to have her ears pierced so that she can wear butterfly earrings just like her sister,” Jamie Guerrette said Tuesday. “We want to make that happen for her.”
Donations can be sent to Bobbi’s Build An Ear, c/o Robert Jackson, 77 Tompkins Road, Presque Isle 04769.