Partially deaf, nearly blind and 22 surgeries in, 13-year-old Elena finds a new smile

When Amy Schefer first saw her daughter, she didn't care that the newborn had no ear on the left side of her head. Or that she barely had a jaw. Or even that her tongue was lodged in her throat and she needed a tracheostomy tube just to breathe.

Schefer was in love.

"I was just saying 'stay,'" she remembers. "'I don't care if you're different. We'll work it out. Just make sure and stay.'"

Little Elena had Goldenhar syndrome, a rare bone anomaly that affects the face and vertebrae. In order for Elena to "stay" it would cost $100,000 during her first year of life alone, followed by more than a dozen surgeries over the next 10 years.

"Basically, Goldenhar occurs when the fetus stops developing for a certain period of time, so it usually affects one side of the body," explains Elena, now 13.

The disorder is usually characterized by the incomplete development of the ear, nose, lip and vertebrae, and Elena is no exception. She is deaf in her left ear, nearly blind in her left eye, she has two spinal malformations and is still awaiting many more surgeries - with 22 already under her belt.

While Amy and her husband, Sebastian, were more than willing to pay whatever costs were necessary to help their daughter reconstruct her face, neither considered the cost of transportation and lodging.

In order to get Elena the best treatment, the Schefers chose to take her to Seattle Children's Craniofacial Center. A round-trip flight from their home in Eugene, Oregon, to the medical center costs $219 each. The average price of a three-star hotel is $133 per night. And the cost of parking in a garage near the hospital every day, $28 a day.

"Twenty-eight bucks. Twenty-eight bucks. Twenty-eight bucks," Amy Schefer says. "We don't have twenty-eight bucks a day plus two, three meals a day [of] hospital food."

And they aren't alone. Many parents whose children have craniofacial disorders, defined as anomalies of the head and face, often forget about the cost of travel when flying to some of America's largest cities to get treatment. That's why Chattanooga-born nonprofit FACES: The National Craniofacial Association was conceived. Its mission is to take care of the bill so families can focus on getting the best care available.

Dollar for a Smile

FACES: The National Craniofacial Association was founded in 1969. Fourteen years prior, a young girl named Debbie Fox was born in Chattanooga with a gaping hole where her face should have been. For years, Debbie's parents hid her from the world and even from herself. When she finally saw her face in a mirror at the age of 8, she was horrified - and impassioned to get a new face.

Debbie got her wish six years later, after surviving a major operation performed by a renowned plastic surgeon at Johns Hopkins Hospital in Baltimore. As news of the girl who found a new face spread around the country, people sent financial contributions to show the family their support. With many more surgeries to go - Debbie would have 58 before she turned 22 - the Fox family used the money to start the Debbie Fox Foundation, since renamed FACES, to pay for their daughter's travel expenses, and decided to help cover the travel expenses for other children with similar conditions.

Today, 47 years later, the Debbie Fox Foundation, renamed FACES in 1997, is still dedicated to providing financial aid to parents around the nation who must travel to consult craniofacial specialists. But despite its national status, the Chattanooga-based nonprofit often surprises visitors by its tiny, three-room office downtown.

"I always say, 'You know, if we had fabulous offices, we couldn't help you. We wouldn't have any money to help you!'" says FACES President Lynne Mayfield.

Instead of lavish facilities, most of the money is spent on the families - and there are a lot to help. Each year, one out of 600 babies in the U.S. is born with craniofacial disorders, says Mayfield. With 20 years of operations often required to reconstruct a face, the parents of these children can easily spend hundreds of thousands of dollars on medical and insurance bills - while also often having to quit their jobs to travel to surgeries or provide specialized at-home care to their child.

FACES helps alleviate some of the cost by purchasing plane tickets for one parent and one child, offering up to $100 a day for food and lodging, paying for gas and covering the costs of parking and tolls. Though there are other organizations that provide the same services for kids with craniofacial defects, they often require the family to re-apply each time the child visits a doctor, or will only help if the family is visiting one of the organization's craniofacial surgeons. With FACES, however, the family applies one time and is free to choose whichever craniofacial center in America fits their needs.

Though the cost of each trip is different, Mayfield says the organization can save a family thousands of dollars, and for the Schefers, who have been helped off and on by the organization for the last 13 years, each dollar means a little more peace of mind.

"Worry is something that you're constantly trying to banish as a parent, especially going into a surgery," Amy Schefer says. "The fewer worries you can have, the easier that is. So it just makes a world of difference to know you've got this paid for."

Each year, FACES helps 75 to 135 families across the U.S. travel to the craniofacial center of their choice, but the organization offers far more than money. First and foremost, it offers information.

"If you have a baby and they tell you the baby is born with Apert syndrome, have you ever heard of Apert syndrome? No," says Mayfield. But the staff at FACES likely has, and with their intimate knowledge of 28 of the most common craniofacial disorders, they are more than willing to answer calls from frantic parents.

For Amy Schefer, that information meant seeing pictures of other children like her daughter and knowing that Elena could have a normal life. Being able to talk with someone knowledgeable was invaluable, the mother says, especially during a time when the internet was not as prolific and few could even understand Elena's condition.

"We would never in the course of our daily life bump into someone with Goldenhar syndrome," Schefer says.

"Never," Elena emphasizes.

And, FACES does not just provide this information to families. Five years ago, the organization sent out a packet full of information about individual craniofacial disorders to every hospital labor and delivery department in the United States. A ll 3,332 of them.

Mayfield realized that many times, doctors were unable to produce a diagnosis for a rare anomaly they hadn't seen in their hospital before, causing additional stress for families like the Schefers, whose physicians couldn't decide if Elena had Goldenhar syndrome or Treacher Collins syndrome, which usually results in underdeveloped cheek bones.

"It's very frightening when you have a baby and nobody knows what's wrong," says Mayfield.

While providing doctors with the resources to understand craniofacial disorders, FACES also provides parents with the resources to talk to doctors - a process Mayfield says begins by teaching them it's OK to ask questions, then coaching them on the right questions to ask.

"Doctors are very intimidating," Mayfield says. "The parents are young, this is maybe their first child and they haven't spent a lot of time in the doctor's office, so we remind them that you are hiring this person."

The organization isn't just an ever-present help to the family as they go to and from the hospital, it also works to create a better social and educational environment for the children by preparing teachers to handle having the child in their class.

Many times, that means helping a preschool teacher explain to students that their classmate's condition is not contagious. Or preparing a teacher to expect lower assessment test scores after a major surgery, when the child is still healing.

All of FACES' outreaches and information and finances work together to create a positive environment in which each child with a craniofacial anomaly can thrive, and though the volunteers and staff don't always get to meet in person the children they've helped, they treat each child like their own family. They send birthday cards, keep in contact; Mayfield even has pictures of the many children she's helped plastered on her office wall.

"You get so involved in their lives. You really do. You become part of their family, and they send you pictures which I love and adore," she says.

Though Elena only recently met the members of FACES during a trip to Chattanooga, she is very aware of the role they've played in her life.

"They have been like a background support because I've just heard how they've been helping repeatedly," Elena says.

Her mom says FACES' financial support is part of the reason Elena still has such a buoyant personality despite her many surgeries. Before and after every medical appointment, the Schefers take Elena out to do something fun. That could mean anything from going out for ice cream or getting a gourmet meal to going to a park or taking a dip in a swimming pool.

"[It's a] big thing for Elena," Amy Schefer says. "She gets whatever treat she wants."

The method, which Amy calls the Oreo Cookie Approach, means the unpleasant portion of each trip is sandwiched between memorable experiences, making each surgery and appointment easier.

"That's important to her," Schefer reiterates.

Without FACES and its daily budget for food, Schefer knows it would be much harder to provide those little moments of joy for Elena. Even if the food budget doesn't cover the activity, it makes the family less worried about each activity's expense.

"She's not aware of this end of things, but as a parent, you have to figure out how you're going to make that happen," Schefer says.

And after hitting bankruptcy and reaching a point where she hesitated to even buy a cup of coffee to stay up with her daughter in the hospital, she is glad she doesn't have to make that happen alone.

"Having that ability to just buy a meal and provide that celebration is the celebration's important," Schefer says.

Creative for the Cause

One of the hardest parts of raising money for craniofacial disorders is that, unlike diseases like cancer and diabetes, very few people know what it is.

"You probably don't have a neighbor who has had a craniofacial disorder, but you probably know a lot of people who've had cancer," says Mayfield.

The struggle for funding has made the nonprofit very careful with its dollars, but it has also given the FACES team an opportunity to get creative with its fundraising.

For Mayfield, that creativity has manifested itself through toner cartridges. While other nonprofit presidents are reviewing organization bylaws and policies, Mayfield is out soliciting used cartridges from local companies. The collected cartridges, taken from office printers, are sent to FundingFactory, which contributes $1.49 for each discarded receptacle.

Though $1.49 may not seem like much, just 10 or 20 cartridges can mean a warm meal for a traveling family - or a cold treat for a post-surgery Goldenhar survivor - and Mayfield has even gone door to door in one particular office complex off I-75 collecting cartridges to make those moments possible.

"She is FACES," FACES board Chairman Belva Farmer says of Mayfield. "And she has a passion for that without a doubt."

But Mayfield isn't the only one with passion. Take Kim "Hippy Chic" Teems, for example, a self-described motorcycle-riding, blue jean kinda girl who started volunteering for FACES around 2003. Teems enlisted the biking community, organizing a 40-mile ride named the Ride 4 Smiles held in different Tennessee locations each year. The event raised more than $200,000 for children and adults with craniofacial anomalies while bridging two communities that may have never interacted otherwise.

"There's a lot of motorcyclists," Farmer says. "Those are really good people who like a good cause and like a good reason to go on these runs."

Though the Ride 4 Smiles retired in 2015 after a successful 10 years, its conclusion has not left the organization without a venue to celebrate its good work and the children helped.

FACES UnMasked, the organization's premier fundraising event, was held for its sixth consecutive year on Oct. 27. The fundraiser feeds off more than just the creativity of the FACES team; it embodies the creativity of Chattanooga. Each year, FACES distributes plain white masks to local and national artists who use their talents to turn the empty canvas into a masterpiece. The masks are then auctioned off at the event, with the proceeds going toward the organization's mission.

Throughout the last six years, the biddable selection has expanded from painted masks to handcrafted jewelry and artwork that may or may not incorporate a mask, but each year, every piece of art tells the same story: the story of the spirit hidden behind the face.

This year, Elena showed guests the spirit behind her face when she spoke about her experience with bullying and her upcoming e-book, "Beyond the Bullying Loop," about the bully from within.

"Sometimes, after you're bullied you kind of start beating yourself up," Elena says. "You think all the bad thoughts that people were thinking about you. So you soak up the energy and become the person to yourself."

"Then," her mom adds, "you're just expecting the worst out of everybody coming down the street, and you think they're looking at you because it's something about you, rather than because they're curious."

The many people who come together to make events like UnMasked possible showcase one of the most important resources people can give to FACES: their time.

Board members like Farmer freely give their time to the organization, as do volunteers working within FACES' seven committees. For example, there's a client services committee that sends birthday cards to the kids, and a financial approval committee that ensures each family has a financial need. And anyone can volunteer to help with the fundraisers, which could always use an extra pair of hands, whether they belong to an attorney, accountant, physician or blue jean kinda girl.

"We appreciate any help," says Farmer. An office manager at Associates in Plastic Surgery, she started working with FACES about 10 years ago as a member of the medical approval committee, which assesses the medical need of each family applying for aid. "You do not have to be on the board to make a difference with FACES."

Although the nonprofit has crafted several other clever little ways to raise money - from biweekly bingo games to AmazonSmile's 0.5 percent donation for every purchase by those who designate it as their supported cause - Mayfield says the most touching donations come from kids with craniofacial disorders who have grown up supported by FACES and now wish to give back.

"I kind of cry every time we get one of those," Mayfield admits. "We certainly don't solicit them, but they know how we've helped them. They know what we've done."