Patient Stories

My teenage son, Jonathan, and I recently visited Seattle Children’s in April for an ophthalmology appointment.

As a parent, I was feeling very concerned about going to the hospital during this time, as my son has an ongoing health issue. When the scheduler called to reschedule his appointment, she told us that they were doing this for safety measures. I proceeded to ask her a lot of questions about safety protocols and she took the time to answer all of my questions. She didn’t rush me. I felt better after talking to her.

When we arrived at the entrance, there was a nurse that stopped us outside and asked us some questions. We got our temperature taken and were given the go ahead to go into the building.

Once inside, many people we saw were wearing masks. I immediately felt better about being in the hospital.

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My two-year-old son Malachi is a medically-complex Seattle Children’s kiddo and a “frequent flyer” here at the hospital. We visit the hospital often—for clinic appointments, routine procedures, sicknesses and medical emergencies. Malachi was diagnosed with Spina Bifida before he was born. He had several lifesaving operations in his first few months with us including spine and brain surgeries on his first two days of life.

Moving to get the care we needed

Malachi, his dad, and I currently live in Auburn, Wash., however we didn’t always live in Auburn. We moved from Yakima to be closer to the care Malachi needs. After two emergency air flights in two weeks just after Malachi’s first birthday, we made the decision to relocate to Auburn.

Like most parents who have medically complex kids, we were kind of pros at social distancing even before COVID-19.

As the parent of a medically complex kiddo, the current pandemic is especially concerning. We were especially cautious early this spring as news of the impact of the virus began to spread. We went into complete isolation—no one in or out of our home—on March 12. Like many parents in our situation, my husband and I were intent on doing everything possible to avoid a hospital admission. We both began working from home. We cancelled all clinic appointments and, instead, opted for telemedicine appointments with my son’s providers. Telemedicine has been so incredibly helpful for us but some things demand in-person care.

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In recognition of Mental Health Month, On the Pulse will be sharing valuable resources and inspiring patient stories each week to guide individuals and families struggling with mental health issues and help destigmatize the topic of mental health in our society.

Alyssa Scott, 17, is a senior in high school. She’s an honor student, participates in her school’s Model United Nations program and is currently taking college-level classes.

By her positive demeanor and ambitious attitude, you would think she’s just like any regular teen.

But there’s more to Alyssa than meets the eye.

Like many individuals, Alyssa lives with mental health issues.

“Even though people might not see it, I struggle every day,” Alyssa said. “Some days are worse than others, but it’s always there.”

For Alyssa, there’s been many obstacles she’s faced in life that have molded her relationship with her mental health. Yet with her strong sense of will and determination, she’s come to a point in her life where she can keep her struggles at bay.

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Tara Nadella shares her personal experience as the sibling of a patient at Seattle Children’s and explains why she approaches life with a lens of inclusion.

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.

I’m 17 and a senior in high school. Family time is important to me, especially with my siblings! When my brother, Zain, and I spend time together, we usually listen to music or go to the movies.

Pretty ordinary sibling stuff, but what makes our story particularly unique is the fact that Zain has cerebral palsy.

Zain is 23 and has been a patient at Seattle Children’s for his entire life – so we see the hospital as a second home. We’ve spent a lot of time there, including holidays like Thanksgiving and Easter.

Last year, Zain was in the intensive care unit for his birthday, so we brought the party to him — taking turns visiting his room and singing. The staff was so gracious about everything, and we were able to bring joy to Zain even though he was in a hospital bed.

From my first taste of onion rings in the cafeteria as a child to understanding how to care for my brother today, this hospital has been a partner on our journey. All children and families deserve the exceptional care we’ve been so fortunate to receive at Seattle Children’s. Read full post »

Seattle Children’s nurse practitioner Amber Bock (right), has been vigilant in managing her daughter Izzy’s care since she was diagnosed with arthritis at age 2.

In downtown Seattle on Dec. 8, hundreds of festive runners dressed up for the Arthritis Foundation’s annual Jingle Bell Run.

Among them was sassy 3-year-old Izzy Bock, who scampered down Fifth Avenue dressed as Cindy Lou Who from The Grinch. Onlookers would likely never have guessed this energetic child has juvenile idiopathic arthritis.

“How long had she been in pain?”

Juvenile arthritis is an autoimmune disorder causing inflammation of joints which can be associated with pain and stiffness, and can affect range of motion.

It is often challenging to diagnose juvenile arthritis in young children.

“Often, kids don’t complain of pain,” says Seattle Children’s rheumatologist Dr. Sriharsha Grevich. “They would rather focus on playing. Parents may not notice something is wrong until their child starts limping or shows other signs.”

This was the case for Izzy, whose mother, Amber Bock, is a nurse practitioner in Seattle Children’s Medically Complex Child program. When Izzy was 2 years old, she came home from daycare with a swollen ankle after tripping on a climbing structure. Amber took her daughter to an urgent care clinic, but X-rays didn’t reveal any serious injury. Read full post »

The joyful sound of caroling could be heard echoing through the halls of Seattle Children’s and Odessa Brown Children’s Clinic (OBCC) this week thanks to two very special visitors, Ciara alongside her and Russell’s new music artist DeAndre. They handed out toys and gift cards to patients and families at the hospital and delighted families with classic holiday songs.

“I’m so grateful we got to come and sing for you all today,” Ciara said. “We believe in you and we’re rooting for you,” she added.

In the inpatient playroom at the hospital, patients and families were overjoyed. They sang along, with some children singing at the top of their lungs with huge smiles on their faces, and others dancing happily to the cheerful tunes. 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 »

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 »

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.

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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 »