On the Pulse

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: Treacher 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 »

Surgery Frees Lillee from Seizures Medication Couldn’t Stop

Lillee Haynes, 4, surrounded by her three older brothers.

When 4-year-old Lillee Haynes runs through the doors of Seattle Children’s South Clinic for her speech therapy appointment and heads straight for a table covered in crayons, it’s hard to imagine that nearly two years ago she faced hundreds of epileptic seizures each day.

“Her seizures happened so often that I installed a camera above her bed to record any she had at night,” said Aimee Haynes, Lillee’s mom. “One night the camera recorded 200 movements. I was shocked to see how many seizures disrupted her sleep.”

Lillee’s brain didn’t rest until she underwent not one, but two neurosurgeries at Seattle Children’s to remove the diseased area of her left brain, allowing her healthy brain to grow and develop.

“You could say Lillee is most definitely right-brain dominant,” laughed Haynes. “That might explain why she has such a spicy personality.” 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 »

Newborn Screening for Rare Disorders Becomes Researcher’s Lifelong Mission

Kaitlyn and Ryan Wyckoff travel from their hometown of Wasilla, Alaska, to Seattle Children’s so Dr. Sihoun Hahn (center) can monitor and treat them for Wilson disease — a rare genetic disorder.

For the first 15 years of his life, Ryan Wyckoff appeared to be a perfectly healthy, active teenager, living with his family in Wasilla, Alaska.

But during New Year’s weekend in 2009, Ryan began to feel seriously ill. He was lethargic and had a high fever that could not be controlled by acetaminophen.

Ryan was so sick he could barely make the trip to his family doctor. The doctor thought Ryan looked jaundiced and referred him to their local hospital, but providers there found nothing wrong so they sent him home.

Ryan’s symptoms worsened. He gained 15 pounds in just a couple days as fluid built up in his abdomen. Ryan’s mom, Lisa Wyckoff, remembered how her tall, slender son looked like he was pregnant.

An MRI revealed Ryan had cirrhosis — advanced scarring in his liver. His condition was life-threatening, so he was flown to Seattle Children’s by Medivac.

“It’s terrifying to have something seriously wrong with your son that no one can figure out,” said Lisa. “We felt so helpless.” Read full post »

Researchers Put Youth Sports Safety and Concussion Awareness Ahead of the Game With Novel Program

Seattle Children’s researchers consulted with the Northwest Junior Football League before moving ahead with a CDC-funded program addressing safety and concussion awareness in youth sports. Photo courtesy of Brian Bodine Photography/NJFL

Seattle Children’s researchers will launch an innovative program in early 2018 aimed at shifting the culture of safety in youth sports and building concussion awareness during competitive play.

The program, called One Team, emphasizes community engagement in conducting brief pre-game safety huddles involving coaches, officials, parents and athletes, with a goal of addressing both sportsmanship and the importance of removing an athlete from play if they potentially have a concussion.

Dr. Sara Chrisman and Dr. Emily Kroshus, both members of the Seattle Pediatric Concussion Research Collaborative and Seattle Children’s Center for Childhood Health, Behavior and Development, designed the program.

“We want to change how children, parents and coaches relate to injuries, and reinforce a line in athlete safety that shouldn’t be crossed, even in a competitive atmosphere,” Chrisman said.

Read full post »

Special Forces of Life Strengthen Bond Between Hudson and His Uncle Trevor

Hudson received a portion of his uncle’s liver in July as part of a living donor liver transplant.

Jordan and Morgan Hill carry with them everywhere a custom-made coin inspired by their son’s liver transplant and the man who saved his life.

Morgan had the coin made weeks before his older brother, United States Army Special Operations Command Lt. Col. Trevor Hill, flew to Seattle from his home in North Carolina to donate part of his liver to his 8 ½-month-old nephew, Hudson.

“My brother saved our son’s life,” Morgan said. “Trevor has had what is called a challenge coin throughout his military career. It’s a sign of respect. It’s a symbol of someone’s unit and their life, and I wanted him to have one representing the incredible gift he gave us.” 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 »

Baby Survives Incredible Odds After Vacation Takes Terrifying Turn

18-month-old Casey Lang defied incredible odds after an aggressive infection threatened his life.

Sara Chenault and her husband, Ed Lang, held their 15-month-old baby, Casey Lang, tightly as they sat outside the hospital on a warm sunny day in July. Casey giggled as he watched the wild rabbits hop through the grass. His eyes lit up and he squealed as he reached for the basketball his dad gently rolled toward him. Casey couldn’t seem happier, but his parents were beside themselves – they were saying goodbye to their baby boy.

“His situation was dire and we didn’t want Casey’s last few hours spent in a hospital room,” said Sara as she tearfully recalls that heartbreaking afternoon. “We wanted our last few hours together to be meaningful so we took Casey outside to let him just enjoy being a little boy.”

Casey and his family had already endured a rollercoaster experience throughout an unexpected 5-week hospital stay. They thought they were nearing the end of their time at the hospital and that Casey may finally be out of the woods. However, that morning everything changed. It became clear the worst was yet to come. 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 »

Meet the 2017 Family Choice Award Winners Making a Difference in Patient’s Lives

The 2017 Family Choice Award recipients (clockwise): Dr. Jimmy Beck, Dr. Nina Natarajan, Dr. Tim Savage and Alicia Sevilla.

When families feel like their child’s care team is putting them first, they remember it.

At least that’s the case for more than 250 people who submitted nominations for Seattle Children’s 2017 Family Choice Awards. Each nomination came with a heart-touching story about a special staff or faculty member whose commitment to family-centered care sustained a family in the most difficult of circumstances.

The nominees were narrowed down to three winners by the Family Advisory Council, and Seattle Children’s pediatric residents also selected one of their peers for the Family Centered Care Award.

Read on to learn how this year’s award recipients – Dr. Jimmy Beck, Dr. Nina Natarajan, Alicia Sevilla and Dr. Tim Savage – make a difference in patient’s lives every day. Read full post »