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Living the Movie Wonder: How 13-Year-Old Nathaniel Found Freedom, Inspires Kindness

Nathaniel Newman and his mother pose for a photo together before Nathaniel undergoes the first in a series of surgeries to allow him to breathe without a tracheostomy for the first time in his life. Watch his incredible journey on ABC 20/20. Photo courtesy of ABC 20/20.

The movie “Wonder,” based on the New York Times bestseller, premiered worldwide today, and although the movie is fictional, the storyline sheds light on a rare craniofacial condition affecting 1 in 50,000 newborns: Treachers Collins syndrome.

“Wonder” weaves together an inspiring tale of kindness, as viewers are transported into the world of August (Auggie) Pullman, an ordinary boy born with an extraordinary face. The story has captured the hearts of millions, but it hits particularly close to home for one Seattle-based family.

Nathaniel Newman, 13, and his family have no trouble relating to the storyline; they live it every day. Nathaniel was born with Treacher Collins syndrome and has been called “Auggie Pullman come to life” by author R.J. Palacio.

Nathaniel knows what it’s like to walk in Auggie’s shoes. His message to others is simple. It echoes that of Auggie: Be kind. Read full post »

Erin Celebrates Major Milestones After One Year in Remission

For the first time in her life, 7-year-old Erin Cross was healthy enough to go trick-or-treating.

This Halloween marked a monumental milestone for 7-year-old Erin Cross. For the first time in Erin’s life, she was healthy enough to go trick-or-treating. And her costume of choice – an old woman – held a special meaning for her family.

Two years ago, Erin’s family was facing the devastating reality that they may never see her grow up. But today, she’s in remission thanks to a groundbreaking immunotherapy clinical trial at Seattle Children’s. Her family finally has the chance to envision her long life ahead, a life filled with normal things, like trick-or-treating and playing with other kids.

“Erin has been so incredibly brave,” said her mother, Sarah Cross. “For us, normal was being in the hospital. Today, she’s cancer-free and getting back to normal life.” Read full post »

Lifelong Seattle Children’s Patient Takes Center Stage, Inspires Others to Believe in Themselves

Cassidy Huff, 15, enjoys recording music.

More than a year ago, 15-year-old Cassidy Huff was celebrating her birthday at Seattle Children’s on the eve of her 39th surgery. She was doing what makes her happiest – singing and playing her ukulele. She performed in front of a small crowd made up of her friends, family and medical team. One of the songs she sang was called “Halo,” a parody of Adele’s popular song “Hello,” and an ode to the metal device around her head that would soon be removed.

“When I’m playing I don’t think,” said Cassidy. “Everything around me disappears, and it’s just me. Music has always been my outlet. It tells a story and gives people an inside look into who I am.”

Today, Cassidy is preparing for another performance, this time for a much larger crowd. She’s working with Grammy-winning composer Mateo Messina on an original song for Messina’s 20th annual Seattle Children’s benefit concert called Epoch. She’ll be performing the song alongside the Northwest Symphony Orchestra in front of nearly 2,500 people at Benaroya Hall. Read full post »

Taylor Overcomes Adversity, Expresses Herself Through Dance

Taylor Haines performs a contemporary dance called “Power of Vulnerability” with another dancer, Vasco Vj Vea.

When 19-year-old Taylor Haines performs, she tells a beautiful story with her body through dance. She leaps, turns and flips across the stage without missing a beat. It’s not until you look a little closer that you’ll notice there’s more to her story than meets the eye. Taylor was born with birth defect called fibular hemimelia, and she has a prosthetic leg.

“Fibular hemimelia is a congenital birth defect that causes complete or partial absence of the fibular bone, the smaller and thinner bone in the lower leg,” said Dr. Vincent Mosca, chief of foot and limb deformities at Seattle Children’s. “It occurs in about one in 40,000 children. These children also have a shortened and bent tibia, the larger and thicker bone in the lower leg, and in many cases, absence of toes on the affected limb. The thigh bone on  is also slightly shorter than the other side. All the other body parts are normal.” Read full post »

From Transplant Patient to Aspiring Transplant Surgeon

Wade Washington underwent a kidney transplant at Seattle Children’s in 2013 and is now a student at the University of Washington with career aspirations of working in healthcare.

Growing up, 19-year-old Wade Washington knew he’d one day need a kidney transplant. The question was never if, but when.

“I never really knew what normal was,” said Washington. “I was born with chronic kidney disease, and so it was what I was used to.”

As a child, Washington’s condition was manageable, but as he grew up his condition worsened. As Washington hit puberty, his kidneys began to fail.

“Wade was born with renal dysplasia, a congenital malformation of his kidneys,” said Dr. Andre Dick, surgical director of the Kidney Transplant Program at Seattle Children’s. “Once he entered puberty, his kidneys couldn’t meet his body’s metabolic demand. We knew he’d need a transplant.” Read full post »

A Life-Saving Transplant Inspires One Family to Give Back

Elliott Kaczmarek, 3, poses with his mother, Nicole, and father, Jonathan.

This April, in recognition of Donate Life Month, On the Pulse shares the story of how a life-altering diagnosis put one family on a philanthropic journey to help others in need.

When Elliott Kaczmarek was 10 months old he came down with what his parents thought was a stomach bug.

“He wasn’t feeling well, but we didn’t think much of it at first,” said Jonathan Kaczmarek, Elliott’s father.

Just in case, the Kaczmarek’s called Elliott’s pediatrician. Initially, there was no cause for alarm. He had a mild fever and threw up a few times, and so their biggest worry at the time was dehydration.

“After a few days he started getting better,” said Nicole Kaczmarek. “Then his condition changed. He turned green and pale and was lethargic. It was then we knew he needed to go the urgent care.” Read full post »

Grateful for the Family Who Saved Her Son, One Mother Reflects on Organ Donation

A year ago, On the Pulse shared the harrowing story of 8-month-old Lincoln Seay. Lincoln was born with heterotaxy syndrome, a severe birth defect that caused his heart to develop on the opposite side of his body. In order to survive, he needed a heart transplant.

In November of last year, Lincoln was placed on the transplant list, but as each day passed, his condition continued to worsen and doctors questioned if he would make it to transplant.

“We had a list of patients and he was the one we were most concerned about,” said Dr. Michael McMullan, surgical director of heart transplantation at Seattle Children’s. Read full post »

It’s a Messy Topic, but Let’s Talk About Poop

There are a lot of ways to describe it: soft, hard, brown, green, runny and stinky. It’s a messy topic often discussed behind closed doors, but today, we’re breaking down what you need to know about poop – from its color, consistency and frequency, to what to do when a child is backed up.

According to Dr. Mollie Grow, a pediatrician at Seattle Children’s and the University of Washington, it can be challenging for some families to be open about the body’s natural process of elimination. In other words, it can be hard to talk about poop. There’s often embarrassment talking about the subject when there shouldn’t be.

“As pediatricians, we get really comfortable talking about poop,” said Grow. “We try to normalize the conversation with patients and families.” Read full post »

Kenley Snowboards With Prosthetics, Proves if There Is a Will There Is a Way

Kenley Teller, 6, snowboards with two prosthetic legs.

Watch 6-year-old Kenley Teller snowboard down a slope and you’ll notice two things right away: a big smile on her face and her fiery red hair billowing in the wind beneath her helmet. What is not apparent are her two prosthetic legs.

“She’s free when she snowboards,” said Kenley’s mother, Mary Teller. “I don’t want to say she feels normal, because how do you define normal anyway? She may need to do things a little different than other people, but she can still do them. I’m constantly in awe of her.” Read full post »

The Unsung Heroes of the Sidelines

Tara Peerenboom is one of 35 licensed athletic trainers in the Seattle Children’s Athletic Trainers Program.

They are a constant presence on the sidelines of sporting events, but they don’t adorn a jersey or get a trophy at the end of a season. We see them as they spring into action when an athlete suffers an injury. They run onto the field or court and quickly access and care for an athlete writhing in pain, but their time in the limelight is short lived, at least from what we see from the stands.

What you don’t see are the hours athletic trainers spend before, during and after games preparing, rehabilitating or counseling athletes and coaches. And so, in recognition of Athletic Training Month, On the Pulse shadowed Tara Peerenboom, an athletic trainer at Seattle Children’s, to get a behind the scenes look at her role both on and off the field.

“People see us on the sidelines and think of us as the individuals who give water to athletes,” said Peerenboom. “They don’t see the time we spend in the athletic training room before, after and during a game or practice. We’re not just medical providers. Our athletes trust us, and we’re there for them during difficult times. Taping and getting ready for games is a small part of our work.” Read full post »