Patient Stories

All Articles in the Category ‘Patient Stories’

3-D Simulation Before Difficult Surgery Helps Erin Breathe on Her Own

Dr. Kaalan Johnson leads his team through a surgical simulation

Erin McCloskey, 11, has been a regular at Seattle Children’s her entire life. First diagnosed with a rare heart defect, a genetic specialist at Seattle Children’s later discovered she had fibrodysplasia ossificans progressiva (FOP). FOP is a complex condition that turns tissue, ligaments and tendons into bone that is outside the typical skeletal structure. Eventually, a person’s joints lose their mobility and it can cause breathing, movement and eating difficulties.

In August, Erin’s mother, Suzanne, sat with her in her hospital room as she did almost every minute of every day since April. Erin’s bed was stacked with stuffed animals and cards sent from members of the online FOP community who showered her and her family with support.

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Teen’s Determination After Brain Tumor Surgery Takes Her to Harvard

Liesel Von Imhof, 18, doing one of her favorite activities – cross-country skiing.

Liesel Von Imhof, 18, came to Seattle Children’s from her home in Anchorage after learning the reason for her migraines: a ping-pong ball–sized tumor in the middle of her brain. In honor of Childhood Cancer Awareness Month, here she shares her journey of diligently working to achieve her goals despite recovering from brain tumor surgery during her senior year of high school.

How long does it take to recover from brain surgery? What does “recovery” really mean? Would I be the same as before, or to what degree would I be different? These were the many questions swirling around in my mind on July 12, 2016, when I sat next to my pale-faced mother in the hospital as we learned I had a brain tumor. I was diagnosed with a Pilocytic Astrocytoma tumor in the third ventricle of my brain.

With this diagnosis, I was soon on a journey of self-discovery to learn just how much grit and determination I really had. Whether I liked it or not, I was going to have to go through two brain surgeries. My life depended on it.

I gripped the thin hospital bed and prepared myself for the ride. Read full post »

Seattle Children’s Longest-Working Therapy Dog Bids ‘Furwell’ For Retirement

In honor of National Dog Day, On the Pulse is recognizing a special four-legged volunteer who has provided comfort to patients at Seattle Children’s every week for more than 11 years.

If Abe had the ability to talk, he would likely share powerful stories about the thousands of kids he has met throughout his 11-year career as a registered therapy dog.

The road to becoming a therapy dog isn’t easy for most loyal companions, but for Abe, it was his calling.

“I always said he was born to be a therapy dog,” said Judith Bonifaci, Abe’s owner and trusty handler. “From the moment I met him, I could tell he was an old soul who had a special purpose in life.”

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Meet a 6 Year-Old Philanthropist

Ryker Ringstad on his first day of preschool

Someone forgot to tell Ryker Ringstad that he was a patient at Seattle Children’s, not a fundraiser.

A happy, gregarious kiddo with blonde hair and a playful spirit, Ryker bounces around his room at the hospital. He climbs on his dad, Paul, and mother, Sarah. Watching him move, you’d never guess that he just underwent his 14th procedure for the lymphatic anomalies in his tongue and neck. Wearing a Seahawks t-shirt, I ask him who his favorite player is and without missing a beat, he answers “Russell Wilson!”

Ryker hasn’t had an easy path, but as his mother says, “he is one strong, resilient little man.”

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Surgery and Rehab Help Arabelle Lasso Life in Junior Rodeos

On Thursday nights this summer, 7-year-old Arabelle Laddusaw is saddling up alongside other children and teens to compete in the Tomorrow’s Rodeo Champions’ summer rodeo series in her hometown of Billings, Montana. As she sits up straight and grips the reins of her horse in anticipation of the chute opening, her cerebral palsy is the last thing slowing down the thrill of events such as barrel racing, pole bending and the crowd favorite, goat tail tying.

However, the prospect of being able to sit naturally on a horse wasn’t always a future possibility for Arabelle who was diagnosed at birth with cerebral palsy, a neurological condition that affects muscle movement and limits mobility.

As a toddler, the muscles in Arabelle’s legs were so tightly wound they would scissor – one leg twisting over the other – making it difficult for her to stand upright or simply straighten her legs out in front of her when sitting.

“With her, it was challenging because she required constant assistance,” said Arabelle’s mother, Christine Laddusaw. “She wasn’t just a normal child that you could put down and let play.” Read full post »

Grayson Gets His Shoes: How a Micro Preemie Beat Overwhelming Odds

Grayson, wearing his black and white “Chucks,” weighed 1 pound when he was born. He overcame several life-threatening conditions while in the Seattle Children’s NICU and is now back home with is parents in Idaho.

For Leslie and Jeremy Barnett, Grayson’s black and white Converse Chuck Taylors represent a happy ending to a tough first chapter of life for their son, who weighed just 1 pound when he was born 18 weeks premature last November.

It took eight months and overcoming tremendous adversity for Grayson to grow into the tiny shoes he received the day before his 117-day stay in the Seattle Children’s neonatal intensive care unit ended.

“We were told that Grayson had this Mt. Everest of health challenges to climb,” Leslie Barnett said, recalling a conversation with Seattle Children’s and University of Washington neonatologist Dr. Maneesh Batra when her son was a few days old.

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Boy Imprisoned by Intestinal Disease Finds Life-Changing Treatment

Brennan Henderson was born 3 months premature with a host of debilitating health issues, including necrotizing enterocolitis (NEC), a condition that affects the intestines.

It’s common for parents of young children to worry about the unexpected accident that may occur while they’re out in public.  But for the Henderson family, being prepared for the unexpected was something that lasted well beyond the early years of childhood.

Whether it was attending a family gathering or simply dropping by the grocery store, there was always a looming concern around when their youngest son, Brennan, may have his next vomiting or bowel incontinence episode.

“There were times when we would go to a restaurant and have to cover him with a blanket,” said Brennan’s mother, Gloria Henderson. “We did it to muffle the sound of him vomiting into a bag. It felt awful having to do it, but it was the only option we had.”

Brennan was born 3 months premature with a host of debilitating health conditions, including necrotizing enterocolitis (NEC).

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More Than a Cat Scratch: Baby Spencer’s Brush With Flesh-Eating Bacteria

At 7 months old, Spencer Nicholson underwent three surgeries to remove dead tissue from a rare disease he contracted due to a cat scratch.

You’ve probably seen it before: something falls, a loud noise ensues, and a cat with an arched back and poofy tail sprints away.

Unfortunately for 7-month-old Spencer Nicholson, when he loudly pulled a bin off a pantry shelf, the family cat was spooked right in his direction. Spencer fell on the floor and the cat, claws out, ran him over. Spencer was left with a deep scratch on his right cheek.

His mom, Kelsey Nicholson, took Spencer to urgent care near their home in Arlington, Washington, where she received a prescription for antibiotics. But hours later, Spencer’s face started to swell. By that evening, Nicholson was so concerned that she took her baby to the emergency room at her local hospital.

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A Life Saved Leads to Dream Job: One Biostatistician’s Journey from Kenya to Seattle Children’s

Frankline Onchiri with his daughters (left to right) Nicole and Joey and his wife Everline.

It seems impossible for Dr. Frankline Onchiri to talk about Seattle Children’s without smiling.

When Onchiri joined Seattle Children’s Research Institute as senior biostatistician and epidemiologist in 2015, his role assisting investigators at the Center for Clinical and Translational Research was so much more than a professional dream come true. It also started the next chapter of a personal journey that brought his family from Kenya to Seattle – not once, but twice – and offered him the rare opportunity to work at the hospital responsible for saving his daughter’s life. Read full post »

Born Into Drug Addiction, Boy Overcomes Hepatitis C and Finds a Forever Home

Talon, 11, contracted hepatitis C from his birth mother’s drug addiction. After enrolling into a clinical drug trial offered at Seattle Children’s, Talon is now free of both the virus and social stigma.

Behind his dimpled smile and comical laugh, Talon Hendrickson-Zimmerman has the kind of carefree spirit that could be hard for anyone to forget.

However, life wasn’t always as easy for the 11-year-old. Talon began his life as one of the forgotten children affected by the “opioid epidemic”, leaving him without a mother or home to call his own.

When he was born, Talon suffered the consequences from his birth mother’s drug addiction, which included the contraction of hepatitis C, a contagious virus affecting 23,000 to 46,000 children in the United States that can cause fatal liver damage if untreated.

“Hepatitis C is a virus that causes inflammation of the liver,” said Dr. Karen Murray, division chief of pediatric gastroenterology and hepatology at Seattle Children’s, who has treated Talon since he was 2 years old. “It can be acquired when the blood or other bodily fluids of an infected person enter the bloodstream of a non-infected person. In children, the most common way that hepatitis C is acquired is when a mother passes the virus to the baby during delivery.”

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