On the Pulse

Seahawks Visit Seattle Children’s, Spread Cheer to 12s in the Hospital

Nico, 15, got a surprise visit from the Seahawks and Sea Gals.

Today, rounds of a different kind were made. Instead of doctors in white coats, the Seattle Seahawks and members of the Sea Gals, dressed in blue and green, made their way through the hospital to visit patients and families at Seattle Children’s. They couldn’t have picked a better day to bring cheer to 12s in the hospital: Dec. 12 (12/12).

“Today brought us a lot of joy, even if it was just for a minute,” said Alberto Tobias, father of Nico Tobias, a patient at Seattle Children’s. “It was really fun. We were so happy to see the players walk into our room.”

The Captain’s Blitz is an annual tradition that brightens the day for Seahawks fans big and small at Seattle Children’s. Read full post »

In Scientific First, Researchers Engineer B Cells to Treat Disease

Primary human B cells could offer the next promising cell therapy. Credit: Human B Lymphocyte by NIAID (CC by 2.0)

Scientists at Seattle Children’s Research Institute have unlocked the ability to engineer B cells, uncovering a potential new cell therapy that could someday prevent and cure disease.

In a paper published in Molecular Therapy, the research team describes how they genetically reprogrammed primary human B cells to act as cell factories capable of delivering sustained, high doses of therapeutic proteins. The gene editing techniques used reprogrammed B plasma cells to secrete a protein that could treat patients with hemophilia B.

Dr. Richard James, a principal investigator in the Center for Immunity and Immunotherapies at Seattle Children’s Research Institute and an author on the paper, discusses the significance of their discovery.   Read full post »

With a Genetic Answer, Parents Find Comfort in Son’s Rare Epilepsy

Genetic testing helped diagnose Nolan Wood, 3, with KCNQ3 epilepsy.

Even though Nolan Wood hadn’t experienced a seizure in more than two years, his parents still had questions about their son’s future.

“We wondered if there were others out there that have what Nolan has,” said Emily Wood, Nolan’s mom. “If so, what does their life look like?”

The Woods’ search for answers began when Nolan, 3, was diagnosed with infantile spasms and regression of his motor skills when he was 6 months old. Before receiving seizure medications, Nolan had hundreds of daily subtle, reflex-like seizures. Due to the regression of his motor skills, he had stopped rolling over, smiling and crying. A condition known as cortical visual impairment had also rendered him legally blind. Read full post »

Pinpointing Pancreatitis: How Family History Played a Role in Amber’s Painful Illness

It’s holiday time in the Louden household. However, this year is unlike any other. For the first time in 11 years, 17-year-old Amber Louden will be able to join her family at the Thanksgiving table and indulge in some of her favorite dishes pain-free.

“I remember Thanksgiving two years ago; I ate so much food that I ended up in the hospital because of the horrible pain I was in,” said Amber. “Last year, I didn’t even get a chance to sit at the dinner table because I spent the holiday in the hospital where I stayed for 12 days.”

Amber’s decade-long battle with chronic pancreatitis prevented her from partaking in cherished holiday traditions.

It may be surprising that these traditions and the root of Amber’s struggle with pancreatitis share one common factor — and that happens to be family.

Read full post »

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 »