As Kannon Koser’s fifth birthday approaches, so is the day that he will finally get his first denture!
Kannon is the son of Kevin and Rachel Koser, who have another 18-month-old son named Kage. The Koser family is from central Virginia. Kannon being the only family member who has ectodermal dysplasia, his parents are eager to get him his first dentures.
At about nine months old, Kannon’s routine dermatologist appointment for a rash on his scalp turned into a shocking realization. The doctor recognized that some of his physical traits were associated with a rare condition called ectodermal dysplasia.
“Kannon was clinically diagnosed by a pediatric dermatologist at the University of Virginia,” Kevin said. “Until that point, we had never heard of ectodermal dysplasia, nor did we have any family history of the condition. We were shocked and in denial, probably because most of the traits the doctor noted seemed normal to us for an infant. The doctor recommended genetic testing to confirm the diagnosis, which was done days before his first birthday in 2016.”
The Biggest Struggle
The genetic results confirmed that Kannon had hypohidrotic ectodermal dysplasia (HED). Along with the inability to sweat, sparse hair, lack of natural teeth, and frequent nose bleeds, Kannon also required surgery to repair a laryngeal cleft—a hole in his larynx that caused him to aspirate on liquids—that some doctors believe may be linked to HED.
According to x-rays, Kannon has four natural teeth, but only one of them erupted around his fourth birthday. Kannon’s lack of teeth has severely limited his diet because he cannot chew. His daily diet consists of protein-filled Kodiak pancakes, peanut butter and jelly sandwiches, bananas with peanut butter, milk and strawberries. He loves popsicles and is also a huge fan of gummies, especially if they are shaped like dinosaurs, superheroes, or Star Wars characters.
The Challenges No Teeth Present
“Kannon has never eaten meat, apples, or any foods that truly require teeth,” Kevin said. “When he was younger, he would eat other soft foods like mac and cheese, diced peaches, and hummus with dissolvable crackers. But not anymore. So we’re also dealing with the fact that he’s a young boy with very picky tastes!”
Even with soft foods, it still takes Kannon much longer to eat because he tries to let the food dissolve as much as possible before trying to swallow.
“We’ll often find him ‘chipmunking’ the food and storing it in his cheeks long after he has left the kitchen table because he needs the food as soft as possible,” Kevin said.
Kannon’s parents are also concerned about his growth and loss of weight if they cannot introduce other nutritious foods into his diet, particularly as he becomes more active in sports and other energy-dependent activities. For the time being, Kannon is still growing, and he is above average weight for his age.
The Kosers said that Kannon first expressed an interest in having teeth around Christmas of 2018 when he was 3-years old.
“He was talking to his friend about teeth and asked the friend to show his teeth. It was the first time Kannon really brought up the topic of not having teeth.”
After seeing his friend’s teeth, Kannon said, “But I don’t have any teeth.” Rachel asked Kannon if that was okay, and Kannon said,
Uh huh. Later, I will have teeth. I wanna ask Santa for teeth.
Rachel asked Kannon what he would do if he had teeth. Kannon, who was holding a chip, said “I’d just chomp bites of this if I have teeth.”
Dentures will mean that Kannon gets to eat so many more yummy snacks like these. He will have the ability to eat the same foods as his friends and family.
The Dentist Knows Best
Kannon’s conversation about teeth spurred his parents to set up his first dental appointment in May 2019 with prosthodontist and dental specialist, Karen S. McAndrew, D.M.D., M.S. Dr. McAndrew’s private practice is one of the NFED’s Dental Treatment Centers.Read More About Dr. McAndrew
Their plan was to start Kannon with an upper denture so he could acclimate to having the prosthesis in his mouth without it being too much for him.
“During the appointment, Kannon wasn’t really comfortable with the bright lights or having someone look in his mouth,” Kevin said. “But Dr. McAndrew gave us some great advice. She said that Kannon will steer the ship. In other words, when he’s mature enough to sit through an appointment, get x-rays, and understand the process for getting teeth, then that’s the time to really pursue dentures because he’ll actually want to wear them.”
Dr. McAndrew provided dental mold trays for Kannon to practice placing them in his mouth. She gave him a toothbrush to get used to that sensation even though he didn’t have any teeth. She allowed Kannon to look at and feel a set of pediatric dentures so he could understand what they were. A year later, Kannon has matured enough to handle the process.
“He practiced placing his dental molds pretty much every day of the last year,” Kevin said. “He brushes his tooth and his mouth routinely. And he understands that dentures will help him eat more foods.”
According to Dr. McAndrew, Kannon is a wonderful young man and a true joy to work with.
“Kannon has been eager and ‘on board’ throughout this whole process. I am excited as he begins his journey throughout all of the steps into adulthood. We will keep in constant contact as his needs evolve. His family, specifically his mom and dad, have been integral in Kannon’s success and his ability to adapt to this condition.”
Kevin and Rachel know dentures would transform his daily life.
“If they make eating a little easier, or if they make him feel more comfortable with other kids, we will do anything that is necessary to make that happen. We just want Kannon to enjoy life and be loved for who he is, regardless of his diagnosis.”
The Journey for Dentures Begins
So far, Kannon has had two appointments. He has at least three more to go before he will have his first denture. To feel more comfortable at the doctor’s office, Kannon takes items that he loves.
“Kannon wore his Indominus Rex dinosaur costume to his first appointment, and brings some of his ‘stuffties’—stuffed animals—to make him more comfortable,” Kevin said. “Getting the mold of his mouth was tricky, but he handled it like a champ. We told him it would feel like jelly—thinking he’d be okay with that, because he likes to eat jelly. He told us afterward that it tasted nothing like jelly, and actually felt like ‘rat poop’. Whatever that feels like!”
Finding medical professionals for Kannon has been easy for the Koser family due to help from the National Foundation for Ectodermal Dysplasias (NFED) and the University of Virginia healthcare system. Even with this help, Kannon’s future dental treatment needs are unknown because they are waiting for his next three teeth to erupt. His family expects Kannon to need bone and tissue grafting in the future. This is because his jawbone and gum line have already receded so much from the lack of teeth.
Dr. McAndrew and her team have developed a treatment approach to aid him throughout his lifetime.
“We know his needs will change and evolve throughout Kannon’s lifetime with growth and development. Helping him gain access to care as his needs change and technology evolves is paramount to his ongoing success,” Dr. McAndrew said.
Will Insurance Pay?
The Kosers are also waiting for their insurance company to tell them if they will cover Kannon’s dentures. Their claim is the first attempt to get the denture covered by health insurance. They are waiting for the insurer’s decision.
“The policy includes language stating that it will provide coverage for medically-necessary treatments of congenital anomalies, but their definition of a congenital anomaly is extremely restrictive,” Kevin said. “The policy states: ‘In no event will the term congenital anomaly include conditions relating to teeth or intra-oral structures supporting the teeth.’ The policy contradicts itself once again by stating that congenital anomalies do include cleft lip and palate. At this point, we are hoping for approval, but expecting a denial based on their definition of congenital anomaly.”
Kannon’s upper denture will cost about $1,800 out of pocket. His parents are anticipating needing to replace his dentures every one to three years depending on how fast he grows. Each new set will likely cost about $3-4,000.
Advocating for Kannon – and Others
The Koser family has been very involved with the NFED. They dedicate a lot of their time to the Family-Driven Advocacy Committee and getting the Ensuring Lasting Smiles Act (ELSA) passed this session of Congress. Their close proximity to D.C. along with Kevin’s desire to pursue politics has allowed them to spread awareness about ectodermal dysplasias and the struggles endured by those who are affected.
“Get involved with the NFED,” Kevin said. “Learn everything you can about the condition. And always advocate. Not just for ELSA or other legislation, but at school, at your workplace, with your friends. While ectodermal dysplasias are rare, there is a wealth of information out there, and you can be the voice to spread that information to others who don’t know or understand the condition.”
Dreams for Kannon
Like any other parents, Kevin and Rachel have dreams for their sons. For Kannon, a set of dentures will allow him to experience things that other children his age can experience.
“We just want Kannon to live a long, happy, and healthy life,” Kevin said. “Whatever he wants to pursue, we’ll support him, and whenever life gets bumpy, we’ll be there for him. We want him to know that he’s capable of anything, even with his genetic condition.”
(Editor’s Note: This blog is part 1 of a 2-part story. You can read in the next blog how Kannon is doing with his new denture!)