Patient Stories

All Articles in the Category ‘Patient Stories’

New Drug Helps Twins Harper and Hendrix Regain the Strength to Experience Childhood

Twins Hendrix (left) and Harper were diagnosed with SMA Type II in summer 2015. They have made tremendous progress since beginning a breakthrough treatment in February 2017 at Seattle Children’s.

Spinal Muscular Atrophy (SMA) had progressively taken away the strength of 3-year-old twin brothers Harper and Hendrix to lift a cup of water, crawl or even take a deep breath on their own. Without access to a breakthrough treatment for the incurable genetic condition, the regression of their motor skills was certain to continue, potentially to the point that it was life-threatening.

So moments like the one that unfolded between Harper and Hendrix in a Seattle Children’s recovery room shortly after their fourth infusion of the new SMA drug, Spinraza, represented much more than brotherly play to their parents, Crystal and Noe Ramos.

Harper raised his right arm high above his head and paused briefly before snapping it down in front of him as he released a makeshift ball of medical tape and paper. The object bounced and then skidded on the floor before it came to rest near Hendrix, who gave it a casual glance before returning his attention to the iPad in his lap he gripped firmly with his fingers.

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Boy Scout Gives Back After His Struggle With Rare Condition

The Pintuff family

When Aidan Pintuff was 4 years-old, he awoke to find the right side of his jaw swollen, red and very sore. Living in Virginia at the time, Aidan’s parents took him to the emergency room where he was given antibiotics. The swelling and pain went away and the family moved on, but they had no definitive answer on what caused the condition.

As Aidan grew up, symptoms would flare up from time to time, particularly if he was hit in the face. Their local doctor had initially diagnosed him with cellulitis. Aidan continued to live his life as a young boy, doing all the things that an active child would do like wrestle with his brother, play sports and participate in the boy scouts.

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Cancer Survivors Conquer the Runway with Russell Wilson for a Powerful Cause

Russell Wilson walked the runway with three young cancer survivors for a special fashion show benefiting Seattle Children’s Strong Against Cancer.

Last week, the MoPOP in Seattle became a glamorous gateway to fashion and fun that benefitted Seattle Children’s Strong Against Cancer, a national philanthropic initiative with worldwide implications for potentially curing childhood cancers without the harmful affects of chemotherapy or radiation.

In partnership with Alaska Airlines, renowned fashion designer and Seattle Children’s supporter Luly Yang presented a fashion show to unveil her new collection, while generously sharing the runway spotlight with honored guests representing the important cause.

The show was kicked off by three pint-sized models – 4-year-old Greta Oberhofer, 5-year-old Lucy Watters and 7-year-old Mason Nettleton – each a courageous cancer fighter.

Alaska Airlines paired three of their pilots and captains with each of the kids as they individually strutted down the runway in their custom-made ensembles designed by Yang.

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Baby Flies Across the Globe for Lifesaving Heart Surgery 24 Hours After Birth

Liam Ray, now 4 weeks old, flew from Guam to Seattle hours after being born for lifesaving heart surgery.

In the early morning hours of May 3, Taylor and Scott Ray welcomed baby Liam into the world at a hospital on Andersen Air Force Base in Guam where they were stationed. After Scott noticed Liam looked a little blue and was breathing heavy, doctors took Liam to get a chest X-ray. Expecting a perfectly healthy baby, Taylor and Scott waited; hoping it was nothing serious and they would be able to take him home very soon, as planned. Unfortunately, their plans were about to change.

Taylor will never forget listening in shock as their doctor said, “Your son needs to be transferred to another hospital to have open heart surgery. You have two hours to get ready and decide who can fly with him.”

“It was devastating,” Taylor said. “You hear stories about this happening but you never think it will be you. I thought we’d be going home as a family, and then suddenly I was alone as Scott and Liam were flying across the globe.” Read full post »

Different Cancers, Same Drug: New Trial Targets Common Genetic Pathway in Tumors

Connor Pearcy, 5, with his family. Born with a tumor that did not respond to traditional therapies, he was enrolled in a clinical trial testing a new cancer drug. After four months of treatment, scans show his tumor is gone.

Connor Pearcy, 5, was born with a tumor below his knee. A teenage boy developed a cancerous thyroid tumor in his neck. Connor and the teenager have very different tumors, but they are both on the same drug. How is that possible?

A new pediatric cancer trial at Seattle Children’s is testing a drug that targets a specific set of genetic alterations associated with soft tissue tumors in different parts of the body. Connor and the other patients in the trial have tumors that harbor one of the characteristic genetic changes the drug is designed to exploit.

Dr. Katie Albert, pediatric oncologist, and Dr. Doug Hawkins, associate division chief of Hematology and Oncology at Seattle Children’s, are overseeing the trial, which is making precision medicine possible for young cancer patients.

“It’s not easy having a child born with a tumor,” Amy Pearcy, Connor’s mom, said. “I appreciate that Dr. Hawkins never gave up looking for something new to offer, and so far it seems like we have found it.” Read full post »

Three Cheers for the Team That Helped Wesslee Overcome Pain

Through Seattle Children’s Pediatric Pain Rehabilitation Program (PReP), physical therapist Sharon Yurs challenges Wesslee Holt to a game of hoops, with some extra balance work added in.

Last spring, Wesslee Holt rolled his ankle at his middle school in Shelton, Washington. The 12-year-old is a dedicated member of his cheer team and was eager to return to the squad quickly. He followed his doctor’s instructions to immobilize the foot and wear a boot — but his pain only increased over time.

Wesslee started using a scooter to keep weight off his foot and rested it as much as possible. Nothing seemed to work. His skin became splotchy and red, and was so sensitive to touch that he couldn’t put a sock or shoe on. He felt depressed and anxious, pulled out of cheer team completely and even left school.

His mother, Steph Fyfe, knew it was time for a different approach. “People wanted to put Wesslee on supplemental security income and call him disabled, but I knew there had to be a way for him to get better,” she said.

She was referred to Seattle Children’s Pain Medicine Clinic and learned Wesslee was suffering from complex regional pain syndrome (CRPS), which sometimes accompanies a routine injury and causes the nerves to send extreme pain messages to the brain. The good news is that Seattle Children’s was able to offer Wesslee a unique treatment option: the Pediatric Pain Rehabilitation Program (PReP).

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Compassionate, Coordinated Care at Seattle Children’s Gender Clinic

Jay waits for his appointment at Seattle Children’s Gender Clinic

Sitting unassumingly on the exam table, Jay’s feet dangle above the floor and his hands are folded in his lap. He displays a warm smile when asked how he’s doing. His mother, Cynthia, looks at her son with an overt sense of pride and the type of love that needs no words to express its presence.

Jay is awaiting the arrival of the Gender Clinic care team and as his appointment draws near, he talks about what life is like as a 10th grader in the Seattle area and his hopes for his future. As his father and brother before him, Jay wants to go into the armed services. His particular branch of interest is the Air Force and he wants to go through officer training at West Point.

Assigned female at birth, Jay also talks about his desire to fully transition to the male gender that he has identified with since he was a baby and the challenges that it presents, especially at his young age.

Cynthia, a cancer survivor herself, knows all about taking on challenges. Her experience as a patient taught her about the medical system.

“I know how important it is to be your own advocate,” she said. “I am so proud of Jay for his bravery in being his own advocate and taking control of his own medical decisions.”

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Finding Hope, Life-Changing Care 2,200 Miles From Home

Alexis, a 7 year-old vascular anomalies patient from Indiana

By the time Alexis Stringer was 7 years-old, she had already undergone a lifetime’s worth of medical procedures; 47 of them to be precise.

Alexis was born with purple areas on her face and neck. At first, doctors thought it was due to birth trauma. But over time, when Alexis was 7 weeks old, doctors determined she instead had a series of blood and lymph vessels that were not developing properly, which are known as vascular anomalies.

The traditional treatment for this disfiguring condition meant that Alexis underwent a procedure called sclerotherapy where chemicals are repeatedly injected into the veins to make them shrink. The procedure can be painful and has to be performed several times under general anesthesia. In addition to the risks associated with repeated anesthesia, sclerotherapy came with additional risks as the high dose of the substance injected has the potential to destroy healthy tissue and even stop one’s heart.

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Chris Pratt and Makenna Form a ‘Dino-Mite’ Team to Help Kids at Seattle Children’s

My name is Makenna Schwab and I’m 14 years old. Over the course of my life, I have been treated at Seattle Children’s Hospital where an amazing team of doctors have performed over 15 life-changing and life-saving surgeries for me.

I was born with a rare connective tissue disorder called Larsen syndrome, which causes dislocations in my joints, instability in my spine and trouble with my breathing. I’ve had to face a lot of challenges, but rather than let my disability hinder me from what I love to do, I decided to embrace it and try to use my experience to create something positive.

When I was 8 years old, I asked my mom if I could sell cookies and lemonade and donate all of the proceeds to Seattle Children’s as a way to give back. Since then, I’ve worked on a variety of projects — from bake sales and toy drives to making packs of food for inpatient families. The money I’ve raised has helped to provide uncompensated care to families at Seattle Children’s. It has also allowed me to provide red wagons for patients in the hospital and purchase new medical equipment to help treat kids like me.

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The Unwavering Dedication of Seattle Children’s Volunteers


Adorned in pastel blue smocks with smiles from ear-to-ear, it can be easy to spot a Seattle Children’s volunteer.

From the volunteers that do arts and crafts with patients in the playroom to those who deliver key items to patient rooms and refill coffee pots for medical staff, every volunteer at Seattle Children’s is significant in helping to keep the hospital running smoothly each day.

Just last year, volunteers donated over 120,000 hours of service, which highlights the commitment of the more than 500 individuals who serve Seattle Children’s every month.

In honor of National Volunteer Week, Seattle Children’s is showing gratitude to its volunteers by sharing the stories of six individuals who have generously donated their time to strengthen the organization’s mission to provide hope, care and cures to help every child live the healthiest and most fulfilling life possible.

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