Patient Stories

All Articles in the Category ‘Patient Stories’

Sam Doesn’t Let His Mental Health Struggles Define Him

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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Families Raise Awareness of Rare, Underdiagnosed Lung Disease

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 »

Sean Graduates from Seattle Children’s and Starts New Adventure

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 »

‘Hold On, Pain Ends:’ Javi Shares Her Mental Health Struggles to Inspire Change

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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The ‘Miracle’ that Saved Abram

Marilee Killpack describes the birth of her fourth son, Abram, as “magical.”

After a typical, full-term pregnancy, Abram was born in Provo, Utah, weighing 9 pounds. He seemed to be healthy and strong, with one exception: He had petechiae all over his body — red dots that appear on the skin when tiny blood vessels break.

Providers suspected the marks were bruises from his quick birth, but blood tests revealed his platelets were extremely low and his immune system was not making enough antibodies to fight infections.

Abram was taken to the neonatal intensive care unit at his local hospital for platelet and immunoglobulin infusions. Still, his blood counts continued to drop. The family was transferred to a nearby children’s hospital where providers determined he had mononucleosis, which they suspected was causing his immune deficiency.

“They said he would be fine in a few months and sent us home,” Killpack remembers.

But Abram was not fine. He developed severe, uncontrollable eczema when he was 3 weeks old.

“His body was shredded,” Killpack said. “We tried everything — lotions, oils, anything we could think of — but nothing worked. He was screaming; he was in so much pain.”

When providers saw Abram’s skin, they immediately sent a sample of his blood for genetic testing. They suspected he might have a rare, life-threatening disorder called Wiskott-Aldrich syndrome (WAS). Read full post »

My Daughter Inspires Me to Make a Difference for Children with Rare Diseases

The author with her daughter, Mariana, 7. Mariana has a rare disease called Pfeiffer Syndrome.

Often in life we have a vision of what we want or imagine our lives to be like, but along that journey, life presents obstacles and opportunities for us. It shapes us and makes us who we are.

My own journey started with its own twists and turns. I was born in Medellin, Colombia and moved to Seattle with my mom at the age of 7. Two months later I got sick. I couldn’t stop throwing up and had a hard time waking up. A year after being hospitalized on and off at Seattle Children’s, I was diagnosed with a cavernous malformation and had brain surgery two months later. My chances of surviving the surgery were small. In Colombia I would have died, but Seattle Children’s saved my life.

When I gave birth to my daughter, Mariana, 27 years later, I never imagined that she too would face a serious medical condition. Much of my life was impacted by my medical condition, but it was nothing compared to what our family would experience as we learned Mariana had an incurable rare disease. It was the beginning of a life-changing journey for our family. Read full post »

A Superhero Surprise for Luella

Luella Konsmo is an avid fan of superheroes, and so when she broke her arm at the end of May and needed a cast, she knew exactly what she wanted.

Samantha Konsmo, Luella’s mother, said her love of superheroes started with her older brother, Cruz.

“He loves superheroes, and she loves him,” Konsmo said.

Luella and her family were enjoying a stroll around Green Lake in Seattle, when Luella fell and broke her arm. Their day of fun in the sun turned into a trip to Seattle Children’s Emergency Department.

When doctors in the Emergency Department asked Luella what color cast she wanted, the beaming 5-year-old didn’t hesitate. She said she wanted a “Thanos arm.” Read full post »

Michael Attends Graduation from His Hospital Bed Thanks to Care Team

Last week, 18-year-old Michael Albrecht walked down the hall of Seattle Children’s Cancer Care Unit in his purple cap and gown. His tassel and honor cords swaying as he walked with his IV pole by his side. He couldn’t attend his high school graduation because was undergoing cancer treatment, and so his care team put on a special graduation just for him at Seattle Children’s. It wasn’t how he envisioned his graduation, but as he always does, he looked on the bright side of things. He had made it.

He posed for photos, high-fived his nurses and doctors and received a mock diploma his child life specialist created for him. It wasn’t the real thing, but the experience was close enough to bring a smile to Michael’s face. The simple ceremony wasn’t the only thing his care team had planned though. They had more in store to celebrate such a monumental milestone. Read full post »

‘You Are Valid’: Torin Takes Pride in Their Authentic Self

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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From Being Sick to Scaling Mountains, Andrew Finds Strength to Soar

Seattle Children’s patient Andrew Peterson with Dr. Ghassan Wahbeh and nurse Teresa Wachs on the day of his Eagle Scout Court of Honor ceremony.

The numerous merit badges adorning 17-year-old Andrew Peterson’s olive green Boy Scout sash not only signify his accomplishments, but illustrate how far he has come.

Andrew’s journey of overcoming a difficult illness that left him in and out of the hospital during most of his early childhood years, led him to recently receiving the highest achievement in Scouting, attained by only about 2% of all scouts.

“Becoming an Eagle Scout has allowed me to reflect on how much I’ve gone through to get to this point,” Andrew said. “I’m grateful for all of the support I’ve received from various people over the years.”

Among Andrew’s friends and family that were present as he received his Eagle Scout medal during a special ceremony in April, were two guests who witnessed firsthand the transformation Andrew made from being a sick and fragile boy to the confident young man that stood before them.

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