Patient Stories

All Articles in the Category ‘Patient Stories’

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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Twin Breathes Easier After Throat Surgery

Emmett Seymer taking steps toward a diagnosis

Life did not start out easily for Emmett Seymer. He and his twin brother, Dashiell, were born at 29 weeks in Allentown, Pennsylvania. Emmett spent the first 30 days of his life on a ventilator because his lungs were underdeveloped. Doctors at the hospital had little optimism for Emmett and told his mother to prepare herself for him to pass away.

After 180 days in the neonatal intensive care unit (NICU), Emmett was able to join his brother at home. Though he had significant difficulty breathing and an inability to swallow normally, he was finally stable enough to get out of the hospital.

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Girl Overcomes Birth Injury

Daisie Losee

Daisie Losee had a rough introduction to the world. Her mother, Melissa, struggled to deliver her sixth child at an Idaho hospital. During the birth, Daisie suffered two injuries. Her broken right arm was discovered as they changed her clothes for the first time. Doctors tried to put a splint on her tiny bone, but the break between the shoulder and elbow was in such a small area that it was difficult to keep stable. The doctors had to improvise and make a sling that held her fist against her sternum to let the bone heal.

The second injury, brachial plexus, was more mysterious.  Neither Cory nor Melissa Losee had heard of that condition. For the first month after Daisie’s birth, she had no movement in her left arm and hand. The Losees saw five different doctors at the hospital in the first seven days of Daisie’s life. None of them talked about the injury to the left arm and the Losees were unsure what was happening with their newborn daughter.

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Driven Mother Confronts Son’s Rare Diagnosis

Hamilton McNamee enjoys a snack.

From his appearance alone, 3-year-old Hamilton McNamee looks like a typical kid. He is rambunctious and playful with strawberry blonde hair and a mischievous smile.

As he climbs on the tables and chairs in Starbucks at Seattle Children’s Hospital, his mother Claire casually states, “He’s going to wander around a little. It’s fine.”

What’s different about Hammie, as his family affectionately refers to him, is that he has a condition known as tuberous sclerosis complex (TSC), a rare genetic disease that causes tumors to grow in various parts of the body, including the brain and other vital organs. Though the tumors are benign (which means they aren’t cancerous), they impact a child’s development in a variety of ways depending on where they grow and how big they get.

At age 2, Hammie experienced some seizure-like behavior after a bout with hand, foot and mouth disease. His primary care provider referred Hammie to Seattle Children’s First Seizure Clinic where tests revealed that he had growths in his brain and he was diagnosed with TSC.

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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 »