Determined to make others smile
He fought tooth and nail for his smile; now he is doing the same for others' right to grin

Aidan Abbott of Slinger, Wis., is a reserved young man. He has a serious demeanor when he speaks about his experience with reconstructive surgery. Yet, when he talks about his passions, his smile lights up his face.

His current pursuits are two-fold: advocacy and nursing. These two priorities he has been committed to for years inform his personal motto: "Be who you are and keep fighting for what is right."

A childhood defined by determination

Aidan and his family's fight began when he was diagnosed at five years old with the rare congenital disorder ectodermal dysplasia.

"We noticed that he was missing a lot of his teeth and many of them were misshapen," said Becky Abbott, Aidan's mom. "We also noticed that he was overheating quite often. He would turn really bright red. I would call it 'lobster red.' We didn't understand why he was getting so warm. His sweat glands don't work properly, so he doesn't sweat properly. He had very coarse hair and very, very sensitive skin."

The smile insurance couldn't see

The Abbotts were told their insurance covered the repair of congenital anomalies.

"However, we had to, since day one, fight with the insurance to get any type of coverage," said Becky. "Insurance covered very, very little, and we ended up having to pay for everything out of pocket to date. We knew we would have to fight tooth and nail to make sure that Aidan received the coverage that he needs and he ultimately deserves."

Becky estimates the bills total tens of thousands of dollars. Insurance coverage for the extensive dental reconstruction Aidan needed to speak and eat was almost nonexistent because it was considered cosmetic.

"A lot of my medical care was denied, and insurance would simply just not deem it medically necessary so they wouldn't cover it at all," said Aidan.

Repeatedly, insurance would not cover dental work but would cover other treatments.

"One of the earliest things I can remember is going through years and years of speech therapy when it was completely unneeded," said Aidan. "All I needed was a simple denture, and insurance just did not want to cover it. So, I had to go through a lot of years of speech therapy and basically teach myself how to eat without a bunch of my teeth when all I really needed was a lower bridge."

Frustration turns to advocacy

Aidan realized in grade school he was not the only person facing difficulties with insurance and massive medical bills.

"When Aidan was around the age of 10, we had exhausted all of our options with the appeals and denials process," said Becky. "Aidan, at the point, was telling me, 'You know, this is wrong. This shouldn't be happening.' He had heard of other kids around the same age who were going through the same thing, and he just said: 'I would really like to try to change things.'"

That's when he became an activist.

Pediatric plastic surgeon Arun Gosain, MD, at Lurie Children's Hospital in Chicago met Aidan through his advocacy work. He said the healthcare system sometimes overlooks the whole patient when it comes to insurance coverage.

"He's learned from his personal hardships and used them to see others in the world don't have to undergo those same hardships," said Dr. Gosain.

Ensuring smiles for everyone

Aidan helped develop legislation to ensure people born with craniofacial anomalies would receive the medically necessary treatments and procedures they need to eat, swallow, see and hear. The Ensuring Lasting Smiles Act (ELSA), named after the popular Disney character from Frozen, would cover the eyes, ears, teeth, mouth and jaw.

"It was Aidan who named the act because he was the one who felt that the ability to smile would be so transformative for him and for other children like him," said Dr. Gosain.

Aidan explained why he was so driven to be directly involved in the process:

"It's basically just to prevent kids going through what I had to go through," said Aidan. "Years of unnecessary treatments and even their parents having to take on these medical bills they could never possibly afford just to have a normal life."

A smile that inspired a career

Aidan's reconstructive journey also led to a career: Nursing.

"Eventually, I'm hoping to go into travel nursing," said Aidan. "Depending on how much I like that, I might just stay as that, continue to travel the world and take up contracts. I would love to travel the world and learn all these different cultures and help out as many people as I can. But I'm considering going into anesthesiology as well and being a nurse anesthetist."

Aidan has already completed his first semester of nursing school.

"It was unexpected when Aidan told me that he wanted to be a nurse," said Becky. "There are many things that Aidan is interested in, but I know there's a lot of nurses who have helped Aidan dramatically throughout his years, especially when Aidan was very scared or frustrated. I think that in Aidan's heart, he knows that that's a way for him to give back and help others who are in the same situation as he's been in."

Dr. Gosain agreed, saying Aidan will be able to relate to his patients because of his personal experience as a patient.

"He's already demonstrated what we all would like to exemplify as health care professionals," said Dr. Gosain. "We have much greater empathy for the patients we are treating if we've experienced even a fraction of the hardships they must cope with on a daily basis."

Still fighting for his smile

Yet, Aidan paused his nursing studies and began working so he could afford the final stages of his dental reconstruction.

"We say that's been almost 21 years in the making to allow him to be able to get a smile," said Becky. "That is because he's had to go through so many different steps in order to get to the age of 21, where he can now get everything that he needs to be able to finish his smile."

It took so long because Becky said many of his treatment plans were denied or delayed. The final steps to a complete smile are likely to be expensive.

"We will need to first start out with bone grafting for Aidan," said Becky. "Next, he'll have to go for his implants. Then he will have to switch to another specialist, which will do his restorative portion, which is ultimately the teeth that go over the implants."

How much that smile will ultimately cost is still a mystery.

"We won't know if insurance will cover any of it," said Becky. "We have to go through the prior authorization process. Then Aidan will have to get his treatments. We'll have to see if they cover it. If not, we're ready for the next appeals and denials process."

Building a future caring for others

Aidan has waited a long time for the ELSA legislation to pass, for his smile and to become a nurse. Yet, he's not deterred if any or all of those goals take longer.

"Just got to keep going, keep pushing to the next step," said Aidan. "Hopefully, within the next two years we're able to get the Ensuring Lasting Smiles Act passed, and hopefully I can keep continuing with my college and go for my nursing degree."

He believes his journey speaks to those struggling, whether with a medical condition or another life challenge.

"I, hopefully, was able to show others that you can be who you are and stand up for yourself and fight for what is right," said Aidan.

To find a qualified plastic surgeon for any cosmetic or reconstructive procedure, consult a member of the American Society of Plastic Surgeons. All ASPS members are board certified by the American Board of Plastic Surgery, have completed an accredited plastic surgery training program, practice in accredited facilities and follow strict standards of safety and ethics. Find an ASPS member in your area.