Teen talks about facial difference so others can find hope for healing

It is every parent's worst fear. Danielle Maytrychit's mom suspected something was wrong early in her daughter's life.

"We noticed that she couldn't open her mouth to a normal range and was always a very messy eater," said Brenda Maytrychit. "Always felt very off. The issue was we couldn't brush her teeth very well, so we decided to take her to the dentist. They weren't very concerned about anything, couldn't feel or visualize any abnormality."

Dani's parents took her to a specialist at Seattle Children's Hospital a few months later. There, a scan revealed a large tumor on the right side of 2-year-old Dani's jaw.

"My heart just dropped," said her dad, Sourika Maytrychit, when the doctor called with the news. "Just like, why my kid? So, I would take that. I wish it was me."

This turned out to be noncancerous but fast-growing.

"It was kind of sticky, and it was really hard to get rid of," said Dani, of what was eventually diagnosed as a Desmoid tumor.

The right treatment at the right time

It's a rare tumor that Dani's medical team struggled to control.

"There is not one type of treatment that a doctor can say, 'This is how it needs to be treated,'" said Brenda. "They kind of look at the patient, look at the area, give their best recommendation and try different things. If they don't work, move on to the next treatment option."

Dani was still growing, so her doctors had to balance aggressive treatment with her long-term health. Her tumor eventually grew to the size of a softball. Doctors tried oral and IV chemotherapy as well as radiation and removing the tumor.

Brenda said constant medical treatments and a facial difference morphed her daughter from an outgoing child to quite shy. That changed when Dani was 12 after meeting plastic surgeon Srinivas Susarla, MD, DMD, MPH.

"I think that she gained some hope about how she could change her appearance and was able to get engaged in her care, engage with him and talk to him about the different things that she wanted," said Brenda.

Dani is nearing the end of her medical journey after eight surgeries, including reconstructive surgeries, which not only restored her facial contours but also improved her eating, speaking and breathing.

From shy to sociable

Dani was always involved in sports, including soccer, skiing and surfing. At 16, she is also interested in other activities and ready to shed her shell.

"I've always been a little self-conscious of the way I look," said Dani. "I used to be very shy because of my appearance, and I didn't like going out, but now I'm really outgoing."

She now speaks at school assemblies, participates in student government and presents for her school news program, Wildcat News. She said she stayed positive throughout her numerous surgeries by focusing on all the activities she could do once she healed.

"After my surgeries, my face is really fragile," said Dani. "So, if I do any of that [sports] and if I hit the snow or water or get hit with the ball, it could easily break my jaw or anything in my face, so I have to stay away from that for three or four months."

Dr. Susarla said he worked with Dani and her family to schedule surgeries in the summer so she wouldn't miss school or around the off-season of her favorite sports. He also wanted to make sure Dani had a say in her facial reconstruction.

"Often you'll be surprised that the thing that they want you to fix is not the first thing that you might think needs to be fixed," said Dr. Susarla.

Showing others they are not alone

Dani is not only active in sports but also volunteers with the Brave Warrior Project, where she works with children who have special needs.

"It definitely helps me not categorize people, but realize at school how to act with different people maybe if they do have autism," said Dani.

She also requested Dr. Susarla share pictures of her reconstructive journey and story with other children and families.

"That's really helpful, particularly when you're doing facial reconstruction; the images are readily identifiable as it's the patient's face," said Dr. Susarla. "So, we are always very cautious about making sure we have consent from patients and families about using those types of images. Being able to show Dani's course and treatment over time can be inspirational to patients. It gives kids hope, but it also gives them very realistic expectations."

Dani also said she welcomes talking about her experience because sometimes others do ask her about her facial difference.

"When I tell people, I go into details," said Dani. "If I just say I had a tumor, they don't really know what that is, but they always seemed surprised that I've gone through this at such a young age and that doctors can even do this."

In addition, she offers encouragement to others with facial differences, no matter where they are on their medical or reconstructive journey:

"You are enough," said Dani. "Be yourself because it doesn't matter what other people think."

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.