Patient Stories

All Articles in the Category ‘Patient Stories’

When Rare Epilepsy Struck Toddler, Diet Paved Road to Recovery

Our son, Sam, goofing around at home days before he developed a life-threatening form of epilepsy known as febrile infection-related epilepsy syndrome.

Parents David and Jennifer Cowan share how the rapid initiation of a special medical diet known as the ketogenic diet helped their son recover by leaps and bounds after he suffered from a rare, life-threatening form of epilepsy known as febrile infection-related epilepsy syndrome (FIRES). For more about how the ketogenic diet is used to treat epilepsy, please see a Q&A with the ketogenic diet team from Seattle Children’s Neurosciences Center.

Over the summer of 2017, our 4-year-old son Sam came down with a high fever that lasted about a week. Seemingly recovered, a day or two later he awoke as normal, snuggled and watched morning cartoons. But shortly after, and completely unexpectedly, Sam began to seize uncontrollably and stopped breathing. Read full post »

When a Child Dies, Program Helps Grieving Siblings

Jenna and Braden Westerholm play together. Braden lost his sister to rhabdomyosarcoma in 2009.

In February 2006, Chris and Michele Westerholm’s 2 1/2-year-old daughter, Jenna, was diagnosed with rhabdomyosarcoma – a cancer made up of cells that normally develop into skeletal muscles. At the time, Michele was 11-weeks pregnant with her son Braden.

“It was frightening to imagine what life would be like, having a child with cancer and a newborn,” Michele said. “I didn’t have the time or the energy to plan for adding a new baby to our family.” Read full post »

I Was Not Ready to Die: How Seattle Children’s Immunotherapy Saved My Life

Aaron (left) poses with Dr. Mike Jensen, director of the Ben Towne Center for Childhood Cancer Research, at the Strong Against Cancer CELLebration fundraising event.

Seattle Children’s doctors and researchers are leading efforts to better treat cancer in children, adolescents and young adults by boosting the immune system with T-cell immunotherapy. Patients who cannot be cured with standard therapies are benefiting from clinical trials developed at the Ben Towne Center for Childhood Cancer Research, and supported by the Strong Against Cancer initiative. 

One of these patients is Aaron. When he feared he might be out of treatment options, Aaron found hope at Seattle Children’s. Now, he shares his story.

Cancer is such an ugly word. On the internet, it has become normal for people to use it to describe things, ideas or people they don’t like. But for me, that word only brings back painful memories of fighting a disease I would not wish on my worst enemies.

I was first diagnosed with acute lymphoblastic leukemia in January 2013. I was 19 years old, living in Vancouver, Canada, and studying computer science at Simon Fraser University.

I became suddenly ill while on a cruise vacation with my family. I had a fever that wouldn’t go away; nausea for no reason; and extreme fatigue. I needed to sleep all the time. I could barely walk. Climbing a flight of stairs felt like trying to climb Mount Everest.

We knew something was very wrong, so my family took me to the Emergency Department at Vancouver General Hospital.

I still remember lying on the hospital bed after the doctor delivered the bad news — I had leukemia. I couldn’t believe it. I asked the nurse as he was putting in my IV, “How long do you think it’ll take before I get better?”

He replied, “My friend, I’m afraid this is just the beginning of a long and difficult journey for you.”

Read full post »

Doctors Double the Length of Anna’s Arms, Giving Her Independence

Lisa went into labor expecting her daughter wouldn’t survive.

Lisa Booth was 40 weeks and 6 days into what had been a completely normal pregnancy when she received unexpected news during an ultrasound.

“Everything was fine at 9 a.m. At noon, I was told my daughter would be a dwarf. By 4 p.m., I was told she wasn’t going to survive,” said Booth. “I went home in a completely shell-shocked state.”

Hours later, Booth went into labor expecting the worst.

“Going into labor I was thinking she wouldn’t survive,” she said. Read full post »

Agatha Comes One Step Closer to Her Dream Come True

Agatha and her brother order ice cream at their favorite ice cream shop, Scoop Du Jour.

Nearly half a mile away from 10-year-old Agatha Holloway’s home is a quaint family owned ice cream shop called Scoop Du Jour. It’s her favorite ice cream shop, and she’s always dreamed of being able to walk there. But until recently, that journey was physically too far for her to walk.

Agatha’s declining mobility made walking long distances impossible, but today, thanks to Seattle Children’s Orthopedics and Rehabilitation Medicine teams, Agatha’s dream has come true. Read full post »

Teen Proves Kawasaki Disease is Not One Size Fits All

Audrey, pictured here with her cello before Kawasaki disease caused a large aneurysm to form in her heart.

Whether she’s performing in her school’s jazz band, teaching cello, painting or working as a YMCA counselor, Audrey Wright, 16, seems to do it all. She especially doesn’t let an aneurysm in her heart that developed as a result of Kawasaki disease get in the way of being a busy teenager and her dreams of majoring in studio art.

Audrey was diagnosed with Kawasaki disease, a serious illness that causes inflammation of blood vessels throughout the body, after coming down with what she and everyone else thought was a really bad viral infection. Despite visiting her pediatrician four times in six days, it wasn’t until her blood pressure dipped dangerously low that she was transported to Seattle Children’s. There, doctors in the Pediatric Intensive Care Unit began to unravel the mystery of what was causing her illness.

“Once they got the report back, all of the pediatricians she had seen before coming to the hospital couldn’t believe it was Kawasaki disease,” Karen Wright, Audrey’s mom, said. “They were pretty shocked because she’s not the typical patient.” Read full post »

Born With a Hole in His Heart, Hybrid Procedure Helps Rowen Thrive

When Chelsie McKinney, her husband, and their two boys welcomed baby Rowen into the world in November 2017, they thought he was “absolutely perfect.”

“He was a big, strong and beautiful boy,” McKinney said. “We counted his fingers and toes like all parents do, and he seemed perfectly healthy. We were so excited to bring him home.”

However, before Rowen was discharged from the hospital, doctors noticed he had a heart murmur. An echocardiogram indicated he had a hole in the wall between the lower two chambers of his heart, which is called a ventricular septal defect (VSD). A VSD is the most common heart birth defect, and about three in every 1,000 babies are born with it.

At just a little more than 1 day old, Rowen was taken by ambulance to Seattle Children’s.

“It was scary, and a lot to digest so suddenly,” McKinney said. “We didn’t know what his future would hold. But even with all of the unknowns, we found comfort in knowing he was going to the best hospital where he would be in good hands.”

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To Save a Budding Heart, Innovative Surgery Performed for the First Time in the Pacific Northwest

Shanae Ceja, first pediatric patient in the Pacific Northwest region to undergo an innovative heart surgery called the Ozaki procedure, with Dr. Jonathan Chen, who performed the complex surgical technique.

As she watched her daughter being wheeled into the operating room, a striking memory overcame the flood of anxious thoughts going through Marisela Barragan’s mind.

“Just a few months before the heart surgery, my daughter Shanae was telling me how desperately she wanted to try out for her school’s volleyball team,” said Barragan. “Her doctors were advising against doing any type of strenuous sport because it could damage her heart, so I kept telling her ‘no.’”

“Then she turned to me and said, ‘Mom, please allow me to try out. If I’m going to die, I want to have done something in my life that I loved.’ Those words truly broke my heart.”

Barragan knew the only way her daughter could pursue volleyball along with her many athletic passions, like any other healthy 13-year-old, was to take a leap of faith with an innovative surgical technique that has only been performed on a small number of pediatric patients in the world. Called the Ozaki procedure, the complex surgical technique would help repair and put a stop to the disease that was causing ongoing damage to Shanae’s heart.

Read full post »

3D-Printed Heart Transforms Family’s Understanding of Complex Heart Disease

Auren Satake, 17 months, was born with a congenital heart defect known as hypoplastic left heart syndrome.

Rachael Satake holds a 3D-printed replica of her son’s heart condition in her hands during a recent appointment at Seattle Children’s Heart Center. For the first time since learning about the defect midway through pregnancy, she clearly sees how the surgeries he has undergone are helping his heart work despite having only one ventricle.

Her son, Auren, has a serious congenital heart defect called hypoplastic left heart syndrome (HLHS), which means he was born missing the left ventricle of his heart. His right ventricle works double time to supply blood to both his lungs and the rest of his body. Read full post »

A Unique Heart, an Unlikely Friendship, an Inspiration for Others

Luke Smith was born with only one functional ventricle.

For many, Valentine’s Day is a day to celebrate love. For Jesse Smith, the day holds a different meaning. You can usually find her running a race, or sharing her family’s story to raise awareness for a cause that’s near and dear to her heart – her son’s heart.

Smith was shocked the first time she heard one in 110 babies are born with a heart defect. She didn’t know of anyone who had a child with a heart defect, until she was carrying a child with one. The day Smith and her husband were told they were having a baby boy, they also found out there was something wrong with his heart.

“It was devastating, especially because we truly thought we were simply finding out the baby’s sex that day. It was one of those moments that change you forever,” said Smith. Read full post »