Neurosciences

Update – February 27, 2020: It is our pleasure to share that the individual featured in this story now uses she/her pronouns and goes by the name Iris. She continues to be seen at Seattle Children’s Gender Clinic and advocate for gender affirming healthcare.

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In celebration of LGBTQ+ Pride Month, On the Pulse shares a story about 17-year-old Torin, a Seattle Children’s patient who battled cancer. After years of treatment and rehabilitation, Torin is now standing strong, yet continues to face challenges that come with identifying as gender non-binary. Torin talks about their struggle and overcoming oppression by not being afraid to express their authentic self.

From as early as Torin could remember, they used writing as a way of expressing emotion.

“I knew I loved writing when I wrote my first series of stories in elementary school,” Torin said. “They were about the adventures of ‘Pencil Man,’ a superhero who had the power to draw and erase things.”

Although Torin finds the plot of the story silly now, it serves as a poignant theme in their life.

Each individual should have the power to create their own story and be true to themself.

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Caitlin with Dr. Stephanie Randle

A cutting-edge procedure for epilepsy at Seattle Children’s, known as responsive neurostimulation (RNS), is offering hope and seizure reduction relief to some patients who are still looking for solutions after exploring other treatment options.

With RNS, a battery-powered device is placed in a patient’s skull to reduce seizures. A neurosurgeon connects thin wires from the device to one or two parts of the brain where a child’s seizures start. When the device senses that a seizure may be starting, it sends a signal to stop it.

Seattle Children’s is one of only a handful of centers across the country to offer this device and the only one in the northwestern U.S. to use this device on a child.

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Ellie Musgrave, who dreams of becoming a professional race car driver one day, had emergency surgery at Seattle Children’s to remove a brain tumor at a young age.

Ellie Musgrave found her calling when she was 4 years old. Her father took her to the racetrack and a dream sparked. She surprised her dad by saying, “I want to do that.”

Much like the electrical charge that brings a car to life, the draw to racing happened in an instant and throttled her into motion. It was in the sound of engines, the whooshing of the cars as they sped by on the track.

That’s when she knew she wanted to be a race car driver.

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A few weeks after Ryder Gordon’s first surgery at Seattle Children’s, Thomas Gordon went to the tattoo shop and got an exact replica of his son’s scar on his neck and chest.

When Ryder Gordon was 2 years old, he underwent his first surgery. It took 12 hours and saved his life.

Thomas Gordon and his wife, Magi, vividly remember the day they handed over their son to surgeons at Seattle Children’s.

“It was gut-wrenching,” said Magi. “You want more than anything to switch places with your child.”

Ryder was the couple’s first child and they never imagined being thrust into a world of comprehensive medical care. But there they were, among the bright lights of the surgical suites and the bustling halls of the hospital.

“Going through a medical journey really humbles you,” added Magi. “Being at Seattle Children’s brought us a sense of comfort. I felt like they cared about us, not just as patients, but as people.”

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Just in time for Autism Acceptance Month, the Seattle Children’s Alyssa Burnett Adult Life Center (ABC), which offers lifelong learning for people 18+ with autism spectrum disorder (ASD) and other developmental disabilities, reopened its expanded doors in late March, rolling out in-person classes for the first time since the COVID pandemic began.   

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Epilepsy can be very difficult to treat – and some families explore a range of options seeking relief from seizures for a child with epilepsy looking for a solution. For 14-year-old Taylor Johnson, a procedure known as deep brain stimulation (DBS) resulted in her experiencing a completely new life and the significant seizure relief she and her family have been trying to find.

In deep brain stimulation, a small battery-powered device sends low-level electrical signals through the brain. The device is similar to a pacemaker in that it uses electrical pulses to help regulate brain function. It can be programmed remotely to help regulate brain function and reduce seizures.

During surgery, a neurosurgeon places two thin electrical wires into deep brain tissue. The wires are connected to a small battery that can be controlled remotely to stimulate the area of the brain called the thalamus. The thalamus is the central point for relaying signals to other parts of the brain. Read full post »

Sirish, pictured in the top row on the left with his family, unexpectedly began developing seizures at age 11. Learn how teams at Seattle Children’s helped to protect his brain.

Sirish was a healthy, happy boy with no underlying medical conditions aside from food allergies and eczema, both of which were easily managed at home.

Then one day, he spiked a fever.

Initially, his mother, Jyothi, a physician who previously practiced in India, wasn’t concerned. The fever broke, and Sirish seemed to improve.

About a week later, though, he spiked another fever. This time, medication didn’t help. Then, the unimaginable happened: he had a seizure.

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Dr. Novotny, right, director of Seattle Children’s Epilepsy Program, discusses the latest developments in epilepsy (file photo)

New research and treatments for epilepsy have come a long way in the last several years. In this Q&A, we talk with Dr. Edward “Rusty” Novotny, director of Seattle Children’s Epilepsy Program and professor of neurology and pediatrics at the University of Washington. As the director of one of the largest epilepsy programs in the nation and the program exclusively dedicated to pediatrics in the Northwest accredited level 4 by the National Association of Epilepsy Centers, Dr. Novotny answers questions about advances in epilepsy treatment.

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Liesel Von Imhof will graduate from Harvard with a degree in stem cell biology in May 2021, five years after Seattle Children’s neurosurgeons removed her brain tumor.

As a high school freshman, Liesel Von Imhof had a dream of attending college at Harvard. She packed her schedule with challenging classes and participated in varsity sports such as cross-country running and cross-country skiing. She had occasional, debilitating headaches that sometimes caused her to miss school, but she blamed them on stress, dehydration or low blood sugar.

In July 2016, just before her senior year of high school, Liesel’s dream of Harvard was almost derailed when doctors found the reason for her headaches: a Ping-Pong ball-sized tumor in the middle of her brain.

At the urging of her doctors, Liesel, then age 17, and her parents traveled from their home in Anchorage, Alaska, to Seattle Children’s.

Thanks to the care she received here, the support of her family and friends, and her own determination, Liesel is graduating from Harvard this month with a degree in stem cell biology — her first step toward a career in medicine.

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Updated March 4, 2022: Thank you to our community of donors for your outpouring of sympathy, support and interest in celebrating the life of patient Zain Nadella, who recently passed away. Zain was the beloved son of Anu and Satya Nadella, and as a long-time patient, the family considered Seattle Children’s a second home.

We are holding the family in our hearts. Memorial gifts can be sent to Seattle Children’s, and donations will support programs the Nadellas are passionate about, including precision medicine neurosciences, cerebral palsy care and research, mental healthcare, neonatal intensive care and equitable access to care.

Zain Nadella is 24 years old. When his family talks about him, they light up. They speak about his eclectic taste in music, his warm sunny smile, and the love he has for his family. Zain has had to struggle against tremendous adversity due to his medical condition. His journey has shaped the Nadella family’s story to one of resilience, empathy, and determination to realize the promise of a brighter future for children with neurological conditions.

Hours after Zain was born, he was rushed to Seattle Children’s Neonatal Intensive Care Unit (NICU). Born with cerebral palsy, he fought for survival in those first few months and required life-saving treatment. His parents, Satya and Anu Nadella, put their trust in the doctors and care providers at Seattle Children’s. Zain’s birth story was not what they had imagined. He was born weighing just 3 pounds and suffered asphyxiation in utero. When they found themselves surrounded by beeping machines and an army of healthcare providers, their focus shifted.

“Like our baby, I too was in survival mode,” Anu said. “I was focused on taking one day at a time.”

Today, Zain still faces many challenges. Zain’s health issues have only intensified as he has grown. He is legally blind and is affected by spastic quadriplegia and has required complex care at Seattle Children’s. The Nadella family likens the hospital to a second home. Read full post »