Patient Stories

Ruth, 3, was diagnosed with a rare gastrointestinal disorder. Despite having a blind mother and partially sighted father, Ruth’s parents proved it was possible to learn the complicated skills that were required to manage her health at home.

For many parents, caring for a child with a serious medical condition can have its challenges.

For Hailee and Ray Hughes, the challenge of caring for their 3-year-old daughter, Ruth, who has a rare gastrointestinal disorder, meant learning complicated skills like how to maintain Ruth’s nutritional needs intravenously through a tube connected to her chest.

“It definitely wasn’t easy at first,” said Hughes. “There was a lot to learn and we wanted to safely care for our daughter in the best way we could.”

Learning the proper techniques involved in Ruth’s care was one thing, but doing it with partial to no vision was another.

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Radhika Poppy Ennis is an energetic 4-year-old who loves to laugh, play and dance. But until recently, she was unable to stand or walk on her own.

When Leslie and Jeremy Ennis adopted Radhika from India last year, she had extensive burns on her lower body. She could not straighten or use her left knee and moved around with her arms, dragging her left leg. The family was referred to Dr. Vincent Mosca, an orthopedic surgeon and chief of foot and limb deformities within the Orthopedics and Sports Medicine department at Seattle Children’s. The only option was to amputate Radhika’s lower leg, so that she could get a prosthesis.

In the past year, Radhika has not only learned a new language and way of life. She also underwent surgery and received a shiny blue prosthetic leg.

“Radhika is really determined and resilient,” said Leslie. “She has been through a lot, but from the very beginning she’s been really happy and up for adventure. We were excited for her to be able to run, dance, play with other kids and just to be off the floor and be seen. She loves people and wants to be in the mix so badly.” Read full post »

Danica Taylor, 3, has undergone treatment at Seattle Children’s for an aggressive, very rare type of brain tumor known as atypical teratoid rhabdoid tumor, or ATRT.

Recalling the treatments her daughter has had over the past year for an aggressive, very rare type of brain tumor known as atypical teratoid rhabdoid tumor, or ATRT, Audrey Taylor says it’s like watching a game where your favorite sports team keeps losing and then regaining the lead.

“There are so many times when you feel like you totally got this, followed by moments where you’re not really sure what’s going to happen next,” she said.

Diagnosed with ATRT at 21 months old, Danica Taylor, now 3, has endured multiple rounds of chemotherapy, stem cell transplants, two brain surgeries, laser ablation and proton beam radiation therapy to try to stop the fast-growing tumor.

Danica remained strong through it all.

“She’s just the bravest and toughest kid I know,” Taylor said. “Whenever I have to do something hard, I summon my inner Danica.” Read full post »

In honor of National Kawasaki Disease Awareness Day on January 26, we are sharing the story of Olivia, a 9-year-old who lives with the disease. Research at Seattle Children’s aims to improve life for children with this condition who are at risk for aneurysms.

When Olivia Nelson was 3 years old, her parents noticed that she had a fever that wouldn’t get better. They brought her to a nearby hospital, where she spent about two weeks being screened for diseases. As doctors tried to find a diagnosis, a lymph node on Olivia’s neck became swollen. Alarmed and wanting an answer, the Nelsons asked to transfer to Seattle Children’s.

“It was very frustrating,” said Olivia’s father, Trevor Nelson. “She was in the hospital for two weeks in and out, and they still couldn’t figure out what was happening.”

Soon after the family arrived at the hospital, Olivia was diagnosed with Kawasaki disease, a serious inflammatory condition affecting the eyes, lips, hands and coronary arteries. The disease affects about 7,000 children in the U.S. each year. Though the family was relieved to have a correct diagnosis, they learned Olivia had developed coronary aneurysms, the enlargement of her coronary arteries due to the persistent inflammation.

A new study funded by the National Institutes of Health (NIH) could improve the quality of life for children with Kawasaki disease at risk of developing coronary artery aneurysms like Olivia did. Dr. Michael Portman, a cardiologist at Seattle Children’s Heart Center Kawasaki Disease Clinic and researcher at Seattle Children’s Research Institute, hopes to find genetic biomarkers that will predict which patients will not respond to the standard treatment and thus have a higher risk of developing coronary artery problems.

“Olivia will have lifelong issues related to her heart and coronary arteries,” said Portman. “It’s a shame that a 9-year-old has severe heart disease that might have been prevented had we had ways to quickly diagnose and treat her disease effectively.” Read full post »

When Cassie Fannin and her husband arrived at her 19-week ultrasound, the newly married couple was excited to learn more about their child.  However, the first-time parents’ joy quickly turned to uncertainty when the ultrasound showed their baby’s stomach in her chest due to a life-threatening condition.

Fannin learned that her daughter, Summer, would be born with a congenital diaphragmatic hernia (CDH). Summer had a hole in the left side of her diaphragm that allowed her stomach, intestines and a portion of her liver to slip through into her chest cavity. This prevented her left lung from developing normally.

“To say it was a shock is an understatement,” said Fannin. “We went from being ecstatic about finding out we were having a girl to absolutely devastated in a matter of seconds. I left that day a completely different person. My sadness slowly turned into anger and resentment as I thought, ‘Why us? Why our baby?’”

Doctors referred the family to Seattle Children’s Prenatal Diagnosis and Treatment Program since Fannin’s baby would need surgery after birth, if she survived. The couple met Dr. Kimberly Riehle, an attending surgeon at Seattle Children’s, when Fannin was about 22 weeks along.

“My husband and I were completely lost and overwhelmed,” said Fannin. “Dr. Riehle helped ease our troubled minds during a really uncertain time. My feelings of bitterness and sorrow slowly started to melt away as I came to terms with the diagnosis and the realization that we were no different than anyone else getting a life-changing diagnosis, and I just focused on my excitement to meet her.” Read full post »

Ruth Garcia, 17, received treatment from Seattle Children’s for her melanoma.

During seventh-grade gym class, Ruth Garcia remembers a friend pointing out a black mole she had on her left knee. Ruth didn’t think much about it until two years ago, when she began to feel pain in her knee and noticed that the mole had grown and changed colors to gray and red.

“That’s when I started to worry more,” said Ruth, now 17.

In spring 2016, Ruth’s mother took her to see her primary care provider near the family’s home in Walla Walla, Washington. They did a biopsy on the mole, and she was diagnosed with spitzoid melanoma. Ruth was referred to Seattle Children’s Cancer and Blood Disorders Center.

A child born in the U.S. has about a one in 40 chance of developing melanoma during their lifetime. Seattle Children’s sees about six children a year who were either misclassified with melanoma or have spitzoid melanoma. The cause of spitzoid melanoma is unknown.

“I was surprised,” said Ruth. “I never thought something like that would happen to me.” Read full post »

With the countdown to the New Year almost here, On the Pulse caught up with a few of the patients who inspired our readers with their stories throughout 2018. Below, they offer their hopes, dreams and goals for the year to come.

A shoulder above his cancer, Miguel sets sights on giving back

Miguel Navarro, 19, is focused on the road ahead after treatment for a rare bone cancer.

In 2018, doctors built a right shoulder for Miguel Navarro, 19, after surgically removing an aggressive type of bone cancer known as osteosarcoma that threatened his life. Miguel spent most of the last semester of his senior year of high school in the hospital going through chemotherapy and intensive rehabilitation to regain the use of his right arm. Now, he’s solely focused on the road ahead – one that includes getting back to a hobby he’s passionate about – driving his stick shift car – and giving back to others.

“My goal for 2019 is to give back to the community that took care of me and supported me during my time of need,” Miguel said. “I’m blessed to be alive. Now, I want to be hope for someone else.” Read full post »

Sam Foster, 19, has struggled with obsessive compulsive disorder for most of his life. At first he felt ashamed of it, until he began expressing himself through music and underwent intensive treatment at Seattle Children’s. Photo credit: Christopher Nelson

When Sam Foster steps onstage, guitar in hand, he lights up the room with his confident presence.

Yet behind his poised demeanor is a painful truth that begins to unravel as he lets his lyrics flow through the microphone.

Sam has battled with obsessive compulsive disorder, or OCD, most of his life.

According to the National Institute of Mental Health, OCD is a common, chronic and long-lasting disorder. It occurs when a person has uncontrollable, reoccurring thoughts, known as obsessions, and behaviors that they feel the urge to repeat over and over, known as compulsions.

In response to the social stigma that often surrounds mental health disorders, Sam initially felt ashamed of having OCD. That was, until he began expressing himself through writing music and eventually got the treatment he desperately needed.

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Julie Munko tried to manage her daughter Annie’s anxiety on her own until she found a therapeutic program at Seattle Children’s that dramatically improved their lives.

Imagine if you had a child who cried themselves to sleep at night because they had no friends; who called themselves “horrible” and drew disparaging images of themselves in their journal; who suffered physical pain when they wore clothes or gave you a hug.

This was once the reality for Julie Munko and her daughter Annie, who suffered from an anxiety disorder. But today, their lives are completely different, thanks to skill-based therapy at Seattle Children’s that pushed Annie outside of her comfort zone.

Crawling out of her skin

Munko first noticed Annie’s anxious behavior in fourth grade. Annie desperately avoided the school library and cried at night if she had to go there the following day. She no longer wanted to sleep over with friends or go to parties.

By fifth grade, it began affecting her school life. Annie became distressed if she unexpectedly had a substitute teacher. She ran out of the classroom if her computer was not working properly. Annie was an excellent student but panicked if her teacher’s instructions were unclear or if she was having trouble with an assignment.

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Tristan, 9, recently underwent a three-stage nose reconstruction.

For most of the past year, 9-year-old Tristan Beck has been on a long, challenging journey toward nose reconstruction after a traumatic accident left him with a missing nose.

December 20, 2017 was a normal day of winter break for the Beck family. Tristan and his older sister were visiting their mother’s office to drop off food for a party. When they returned to the car, a dog was in the parking lot, showing no signs of aggression. However, when Tristan began to throw the dog a piece of food, it lunged at Tristan’s face and pulled him down. Tristan’s sister pulled him back, and the dog ran away.

All Tina Beck, Tristan’s mother, remembers is the blood on his face when his sister brought him back into her office.

“There was so much blood it was hard to see exactly what was wrong,” said Beck. “It was very hard for me to look at my son at first. My heart hurt and I was blaming myself for what had happened, but I wanted to be strong for him.”

The family called 911, and Tristan was transported to Seattle Children’s Emergency Department. Read full post »