Finding strength through adversity: How Essentia is helping a young boy with a genetic condition

Where there’s a will, there’s a way. That’s just one way to describe 3-year-old Walter Duong’s outlook on life. Walter’s parents are Phoebe and Jeff, both 30, and this Duluth family has been “finding a way” since Phoebe found out she was pregnant.

“It was such an exciting day when we found out we were pregnant,” said Phoebe. “Jeff and I always knew we wanted kids and we were excited the time had come.” 

Living in Oregon in 2018, Phoebe’s doctors diagnosed Walter with Treacher Collins syndrome prenatally. It’s a genetic condition that impacts the bones in the lower part of the jaw and ears. Walter consequently has hearing loss, wears hearing aids and has an undersized jaw that causes obstructive sleep apnea and requires him to have a tracheostomy tube. But he doesn’t let those things define who he is – a little boy, full of life.

“He loves to be outside,” said Jeff. “He goes to an outdoor playschool several times a week and loves to go hiking and exploring. He’s a little jokester and very independent.”

In 2019, shortly after Walter was born, the Duong family moved back to Minnesota to be closer to family. Because of his condition, Walter’s doctors knew he would need a high level of care with a robust team of specialists. Phoebe said Walter’s doctors in Oregon recommended Essentia Health as the best place for him to receive ongoing care.

“It’s really nice to have a team of people here in Duluth who know the plan and are willing to support his care in every way, communicate with each other effectively and always support Walter,” said Phoebe.

 Walter routinely sees his primary care physician, Dr. Steven Schumacher; audiologist Camie Wheeler; Dr. Amy Garcia, a pediatric gastroenterologist; and speech therapist Kristin Goman.

“Kristin is who we see the most,” said Phoebe. “She knows exactly how to work with him without pushing him too far. It’s really nice to see her working so well with him.”

“Walt is an independent, playful, hard-working and determined young boy,” said Goman. “It has been a rewarding journey to help facilitate his ability to gain independence with his feeding skills and ability to vocalize using his speaking valve. Working with families like Walt’s is what makes my job so rewarding.” 

Because his condition causes some overlapping symptoms, Walter’s doctors and specialists need to be on the same page, which requires significant communication between departments — something that’s never lacking, Phoebe said.

“It seems like everything is as seamless as it could be,” she said. “The communication with all of the providers to work out concerns and provide Walter with exceptional care is wonderful.”

Phoebe adds that, over time, she has seen Walter become more comfortable with his care team, noting that he actually likes going to the doctor now.

“He’ll run in and show them his toys and talk to them,” Phoebe said. “He even likes to put his blood pressure cuff on.”

While Walter uses sign language as his primary form of communication, through speech therapy Goman has helped him begin to speak more clearly. He has completed feeding therapy and has been able to transition off pureed foods to eating solid foods for every meal. Those are just a few things that have improved. Phoebe is proud to say Walter is doing better than ever.

“When I look back at the function of Walter from when we first got here to now, he has made so much progress with his speech,” said Phoebe. “He doesn’t get frustrated at school anymore when he’s talking to his friends and it’s really heartwarming to see him have that freedom.”

At just 3 years old and a whole life ahead of him, Phoebe said Walter is living large and loving life. Fresh off a trip to Hawaii, which Walter loved, the trio now spends their days doing what Walter loves the most – walking on the Lakewalk in Duluth and playing the Toy Story version of Monopoly Junior.