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Patient Stories

All Articles in the Category ‘Patient Stories’

‘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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Sonny Stays Strong as Cell Therapy for His Rare Condition Advances

Sonny D’Ambrosio, age 7, here with his parents, was diagnosed with an autoimmune condition called IPEX as an infant.

Earlier this year, Nicole D’Ambrosio found herself in front of a room full of scientists that were gathered in part to discuss their progress on a novel cell therapy that has the potential to one day save her son’s life.

She had been asked to present her family’s story as part of a company-wide meeting at Casebia Therapeutics in Boston. As she began, she recounted how her only child, 7-year-old Sonny, has reached the brink of death more times than she can remember because of the rare autoimmune disorder he was diagnosed with as an infant. How the bone marrow transplant he received was the only thing that could save him, but caused endless complications, including skin necrosis and epilepsy.

How the thought of going through another transplant when the initial transplant failed compelled her and her husband to pack up their home and move 3,000 miles west to seek other options. How she lies awake at night praying that Sonny’s body can stay strong enough until a safer treatment comes along. How, despite everything he’s been through, Sonny is still a happy little boy with a wicked sense of humor. Read full post »

‘Like Looking at a Miracle’: Baby Blossoms Thanks to Gene Therapy

Arabella Smygov, 7 months, of Lynnwood, Washington was one of the first babies in the state to receive the gene therapy, Zolgensma. The U.S. Food and Drug Administration approved Zolgensma for the treatment of Spinal Muscular Atrophy in children less than 2 years of age this month.

When Arabella Smygov was diagnosed with spinal muscular atrophy (SMA) type 1 at 3 months old, the first recommendation Dr. Fawn Leigh, a neurologist at Seattle Children’s, gave her parents, Sarah and Vitaliy, was to wait on searching for information about SMA online.

This is because up until a few years ago, SMA type 1 was a fatal diagnosis. Most of the information available online painted a bleak picture. Babies diagnosed with SMA type 1, the most severe and common form of the neurodegenerative disease, usually don’t survive beyond age 2 and if they do, they require full support for breathing from a ventilator.

Leigh had good reason for wanting her parents to have hope for Arabella’s future. Two treatments, including the first-ever drug approved for the condition by the U.S. Food and Drug Administration (FDA) in 2016 called Spinraza, and Zolgensma, a gene therapy approved by the drug agency this month, are rapidly changing the trajectory for children with Arabella’s condition.

“I always remember back to when I had to offer my first SMA diagnosis,” Leigh said. “I was heartbroken to tell this young couple that we didn’t have anything for their baby. Now, we’re planning a future for these babies because we have not one, but two good treatment options.” Read full post »

Makenzie Dances Again After Pediatric Stroke

Makenzie Childs, 6, has returned to doing what she loves most – competitive dance – following a stroke in October 2017.

The lopsided smile on Makenzie’s face said it all. She had just thrown up, and her dad, Shawn Childs, was helping her get cleaned up in the bathtub.

“My husband yelled for me to come into the bathroom and then asked Makenzie to smile,” Jamie Childs, Makenzie’s mom, said. “The smile was devastating. It was only the right half of her face. I knew something wasn’t right.” Read full post »