On the Pulse

From day one, Harper Foy has defied the odds. When she was born, she was given a 50% chance of survival. Today, the spunky toddler, who loves to dance, sing and pose for photos, is 4 years old and inspiring many.

“Harper is here for a reason,” her mother, Angie Foy, said. “She’s making a difference in the world.” Read full post »

Ellie Osterloh, 17, participated in the clinical trial for Trikafta, a breakthrough cystic fibrosis therapy approved by the U.S. Food and Drug Administration in October 2019. Photo courtesy of Audrey Redfern.

When 17-year-old Ellie Osterloh spins high above the ground from a lyra, a circular hoop used in aerial acrobatics like Cirque du Soleil, she feels empowered.

“On the lyra, it’s an incredible feeling to be so high in the air with no harnessing,” Ellie said. “It’s a lot of adrenaline and I feel like I can do anything.”

Now, thanks to Trikafta, a new drug approved in October 2019 by the U.S. Food and Drug Administration (FDA), Ellie, who participated in the clinical trial for the drug, shares a similar zeal for her future.

“Even though it’s hard sometimes to be so optimistic, I’ve always thought it might be possible to go to college and have kids and a family of my own,” she said. “It’s crazy how my outlook has changed. I’m still processing all the possibilities.”

That’s because Ellie has lived her entire life with cystic fibrosis, a rare, progressive, life-threatening disease. She had her first appointment with Dr. Bonnie Ramsey, the director of Seattle Children’s Center for Clinical and Translation Research, still in her mother’s womb. Hours after birth she was transferred to Seattle Children’s where she began intensive therapy that she’s continued over the last 16 years.

“This is a really big step forward for Ellie and other people living with cystic fibrosis,” said Ramsey, a pioneer in cystic fibrosis treatment. “Ellie is a highly talented young lady with a bright future ahead of her.” Read full post »

Madeline Boese was one of the patients in Seattle Children’s PLAT-03 trial.

Chimeric antigen receptor (CAR) T-cell immunotherapy, which reprograms a child’s white blood cells so they can seek out and destroy cancer cells, is making a difference in children’s lives. Currently, Seattle Children’s has multiple trials open that could benefit children and young adults with relapsed or refractory cancers. In October, Seattle Children’s opened a new pediatric research facility, Building Cure, to accelerate discoveries such as immunotherapy.

Seattle Children’s researchers are continuing to realize the promise of CAR T-cell immunotherapy and improve outcomes in difficult to treat pediatric cancers. They are applying knowledge gained from ongoing clinical trials to study effects on the youngest patients, develop new interventions to prevent side effects and boost T-cell persistence, and to better understand resistance to therapy.

Research recently published in major scientific journals and presented at the 2019 American Society of Hematology (ASH) Annual Meeting contributes new insight guiding the evolution of the experimental therapy. Here, On the Pulse summarizes their findings. Read full post »

Neurons found in the brain stem gives new clue to nicotine, sudden infant death syndrome link. Source: Getty Images.

Researchers at Seattle Children’s Research Institute have discovered that populations of neurons in the brain stem have a previously unrecognized susceptibility to disruption by nicotine during early brain development.

Published in the Journal of Comparative Neurology, their findings offer a clue to how nicotine exposure in utero could have a lasting effect on the brain’s wiring and give rise to negative outcomes like sudden infant death syndrome (SIDS). Read full post »

With the support of his alert dog Morris, the latest insulin pump technology and his care team, Cameron is thriving and hopes to be a role model for other kids with diabetes. He shares his experience in time for National Diabetes Month.

Wherever 14-year-old Cameron Hendry goes – school, soccer practice, wakeboarding, shopping, even a trip to Hawaii – a Labrador retriever named Morris follows.

Morris is not only the high school freshman’s beloved pet. He is Cameron’s diabetes alert dog, always there on his left side to monitor his blood sugar and let him know when his level is too high or low.

Seven years ago, Cameron was diagnosed with type 1 diabetes, an autoimmune disease in which blood sugar levels rise because the body stops making insulin. The chronic condition requires lifelong insulin via shots or an insulin pump.

Symptoms of type 1 diabetes include increased thirst, urination and weight loss. Fortunately, Cameron’s parents recognized his symptoms early and took him to Seattle Children’s emergency department. Cameron was diagnosed and his family received intensive education on how to manage his condition, which included checking blood glucose levels and giving insulin shots multiple times each day. There is currently no cure, though promising research is underway.

“Type 1 diabetes is quite a burden day to day on both kids and their parents,” said Erin Sundberg, ARNP, a pediatric nurse practitioner with Seattle Children’s Endocrinology and Diabetes team, who has been seeing Cameron for the past two years. “It requires round-the-clock vigilance because glucose levels can change due to activity and illness, so patients need to check their blood sugar multiple times each day.” Read full post »

A federal contract awarded to Seattle Children’s will establish a new center to study tuberculosis. Source: Getty Images.

Seattle Children’s Research Institute is one of three recipients of $30 million in first-year-funding provided by the National Institute of Allergy and Infectious Diseases (NIAID), part of the National Institutes of Health (NIH), to establish centers for immunology research to accelerate progress in tuberculosis (TB) vaccine development.

The awards provide up to seven years of support for three Immune Mechanisms of Protection Against Mycobacterium tuberculosis (IMPAc-TB) Centers to uncover the immune responses needed to protect against TB infection. In addition to Seattle Children’s, other IMPAc-TB centers will be led by the Infectious Disease Research Institute, also in Seattle, and the Harvard T.H. Chan School of Public Health.

On the Pulse learned more about the significant research that will be funded by this award which has the potential to provide up to $83 million to the Cascade IMPAc-TB Center, led by Dr. Kevin Urdahl, a TB researcher in Seattle Children’s Center for Global Infectious Disease Research. Read full post »

Seattle Children’s Zero Suicide Initiative helps identify and treat children ages 10 and up who are at risk for suicide.

A teenage boy arrives at Seattle Children’s Emergency Department (ED) with an increased heart rate. His parents are scared and unsure of what could be causing their son’s pulse to spike. While the nurse takes the patient’s vitals, she asks him a series of questions about suicide — prompting the patient to share that he tried to overdose on prescription medication the night before. The nurse informs the provider, and an immediate plan is set in motion to further assess not only the patient’s physical health, but his mental health, as well.

A 10-year-old girl enters the ED with a sprained elbow after taking a tumble on the soccer field. Her parents have been taking her to therapy to help with her anxiety, and the therapist communicates his findings with them often. Because she is so young, the therapist has never directly asked the patient if she’s ever had suicidal thoughts. After the ED nurse initiates suicide-screening questions, the girl admits that she has had thoughts about harming herself in the past. Prior to discharging the patient, a mental health evaluator shares resources and information about suicide with the family, and the provider contacts the patient’s therapist and asks the girl’s suicidal thoughts be addressed in their next appointment.

These are just two stories of the more than 500 children who have screened positive for suicide risk in Seattle Children’s ED and inpatient settings over the past six months who presented for concerns unrelated to their mental health. These crucial “catches” were made with help from a new clinical pathway known as Seattle Children’s Zero Suicide Initiative (ZSI), a universal screening method to help identify and treat youth at risk of suicide.

Read full post »

When Sam Duenwald, 18, was in seventh grade, he got sick and had to miss a couple of weeks of school.

However, a couple of weeks of missed school turned into three, then four, then five.

“It became a vicious cycle,” Sam said. “I was getting really anxious about going back to school because I knew I had missed a ton of homework and that was causing my grades to drop, so I decided to avoid going to school altogether. This of course spiraled into missing even more homework, making my grades suffer further.”

Naturally, the situation caused tension between Sam and his parents.

“There was a lot of stress at home, and I was fighting with my parents all the time,” Sam said. “They knew I needed help.”

Sam’s anxiety became so severe that his parents took him to see a psychiatrist at Seattle Children’s midway through seventh grade. He was prescribed anxiety medication, which helped Sam finish up the school year.

“Over the summer, I kept telling myself, ‘I need to go back to school regularly; I’m going to be in eighth grade and everything is going to be great,’” Sam said.

Read full post »

The parasite that causes malaria waits in the salivary glands of the mosquito until it has the opportunity to move to a human host. New research exploring this stage of the parasite offers findings that could help identify new strategies to protect against malaria. Photo: Getty Images.

Within seconds after an infected mosquito bites, the malaria parasite navigates the host skin and blood vessels to invade the liver, where it will stay embedded until thousands of infected cells burst into the bloodstream, launching malaria’s deadly blood-stage infection.

Now, for the first time, a team from Seattle Children’s Research Institute describes how malaria Plasmodium parasites prepare for this journey as they lie in waiting in the mosquito’s salivary glands. Researchers say this knowledge may help identify new strategies to block transmission of the parasite – a critically important step needed for the eradication of malaria, a disease that continues to sicken over 300 million people and kill an estimated 435,000 people worldwide every year. Read full post »

Isabelle Zoerb, 13, has a rare genetic disorder called primary ciliary dyskinesia (PCD).

Like a typical 13-year-old, Isabelle Zoerb plays volleyball and tap dances. She also regularly uses an inhaler, takes antibiotics to minimize lung inflammation and wears a therapy vest that vibrates to help clear her lungs. A device in her chest provides intravenous medication when needed.

This is because Isabelle has primary ciliary dyskinesia (PCD), a rare genetic condition. Cilia are tiny hair-like cells in airways that beat in a coordinated way that clear out germs, mucous and particulates like dust from the respiratory tract. In people with PCD, cilia do not beat properly, which prevents bacteria from clearing the lungs, sinuses, nose and ears.

When Caroline Zoerb adopted Isabelle from China as a toddler, Isabelle’s organs were reversed like a mirror image. She had been born with a hole in her heart and was constantly sick. Seeking answers, the family met Dr. Margaret Rosenfeld, an attending physician and researcher at Seattle Children’s, who thought she might have PCD based on her symptoms.

Seattle Children’s is the only PCD referral center in the Pacific Northwest, with patients coming from Wyoming, Idaho, Oregon, Alaska and Montana. Providers see patients for regular follow-ups to make sure their needs are being met and they are responding to their therapies.

“We always seem to make our way to Seattle Children’s because they have the expertise to help someone with such a rare disease,” Zoerb said. Read full post »