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.
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 »
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 »
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 »
From day one, 21-year-old Sean Gallagher has been able to command a room. He jokes that it’s because he has a flair for the dramatic; it could also be because of his bright and infectious personality.
Sean was born with a facial difference, and his medical journey has been long and complex. MaryJo Gallagher and her husband David knew their son would be born with a small jaw, but the extent of Sean’s condition was beyond what they had envisioned. Immediately after the delivery, Sean was whisked away by a frenzied team of doctors and nurses.
The next couple days were a blur of emotions as the couple grappled with their son’s condition and what it meant for his development. They had many questions, but not nearly enough answers.
Dr. Michael Cunningham, division chief and medical director of Seattle Children’s Craniofacial Center, said he’ll never forget the first time he met Sean’s family. Sean was only 2 days old at the time. Cunningham went to visit them at the hospital where Sean was delivered.
“I was standing across the bed talking to Sean’s mom and said, ‘Everything is going to be okay,’” Cunningham said.
MaryJo said she’ll never forget that day either. She said it was like a physical weight had been lifted off their shoulders. They felt hopeful.
“He’s a family hero,” MaryJo said. “He explained to us about Sean’s condition. He knew right away what it was. We were so appreciative of him reassuring us. This is not the road we would have chosen for our little boy, but we are glad we are on it together.” Read full post »
I was in middle school when my mental health started deteriorating. Every day I would hide under tables, cover my ears, or hit my head. I would lash out at anyone who tried to help me. I was anxious 24/7. But I kept denying what was happening. I told myself that I was fine, that I was just going through a rough couple of days. Then days turned into weeks, and weeks into months.
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