From surviving to thriving – teen puts her mark on a major brand

2018 Nike patient-designer Kirsten wants you to know, “We all survive.”

© Nike, Inc. & OHSU Doernbecher Children’s Hospital

Sixteen-year-old Kirsten Brown of Salem, Oregon, is no ordinary teenager. Kirsten is both a heart transplant patient and a stroke survivor. She is also a 2018 Nike Doernbecher Freestyle patient-designer who has created a powerful message of hope and inspiration with a single swoosh.

“2016 was a crazy year,” said Kirsten’s mom, Amanda. That January, her daughter had cold symptoms that became severe. Amanda took Kirsten to the pediatrician several times. In February, a chest x-ray and blood work revealed that Kirsten had an enlarged heart. Kirsten was immediately admitted to OHSU Doernbecher Children’s Hospital in Portland. Doctors told the family that she had either dilated cardiomyopathy or myocarditis. The latter could be treated with medication to help her heal.

Kirsten was diagnosed with cardiomyopathy. “We didn’t even know until she was admitted that she had a heart condition,” said Kirsten’s mom.

Cardiomyopathy, which prevents the heart muscle from pumping enough blood through the body, is rare in children. According to the American Heart Association, 1 in 100,000 children younger than 18 years old in the United States are diagnosed with cardiomyopathy each year. Cardiomyopathy tends to be progressive and can sometimes worsen quickly.

Once she was diagnosed, Kirsten spent two weeks at Doernbecher Children’s Hospital in the pediatric intensive care unit. She was then transferred to Lucile Packard Children’s Hospital Stanford for a possible heart transplant.

A few days after she arrived at Packard Children’s, Kirsten was placed on a left-ventricular assist device (LVAD), a mechanical pump that supports heart function and blood flow in people who have weakened hearts. Within the first few hours after receiving her VAD implant, Kristen was diagnosed with an ischemic stroke. Ischemic strokes, which account for the majority of all strokes diagnosed each year, occur when blood flow to the brain is severely reduced after the arteries to the brain become narrow or blocked. Initially, Kirsten was unable to speak after her stroke. After a few weeks in the cardiovascular intensive care unit, she slowly began to recover and regained some of her verbal ability.

Because Kirsten was a pediatric patient on a VAD, no local rehab hospital was equipped to help her. So Kirsten worked with physical and occupational therapists at Packard Children’s for five to six hours every day. She was determined to get better.

In April 2016, Kirsten was placed on the heart transplant list. Five weeks later, she received her new heart.

That summer, Kirsten transferred back and forth between Packard Children’s and a Santa Clara care center, all the while making progress in her recovery. Her mother said they knew Kirsten had turned a corner the first time she was able to move her left leg.

“Kirsten’s recovery is a testament to her and her mom’s perseverance,” said Lynsey Barkoff, a pediatric heart transplant coordinator and nurse practitioner at Packard Children’s. According to Barkoff, Kirsten’s positive energy is unmissable. “She brings such a bright light to any situation.”

In September 2016, Kirsten was discharged from Packard Children’s. She was able to take a few steps without assistance, but was mostly still wheelchair dependent. Her road to recovery was not over.

“Being a teenager,” said her mom, “Kirsten was stubborn and somewhat resistant. But once she realized she could do it, that she could walk, she got a little of her independence back. Before this whole experience, Kirsten was shy and didn’t talk a lot, even with family. She’s always been funny and witty and bright, but now she’s that way more so, even outside of our immediate family. Being surrounded by doctors and nurses, having to communicate with everyone and overcome her challenges — now she talks with everyone.”

In conversation with Kirsten, you can sense her focus. She’s direct, determined and down to earth. Those who know her say those traits played a major role in her remarkable recovery.

Earlier this year, Kirsten was selected as one of six patient-designers who were given the opportunity to channel their real-life inspiration into designing shoes for the Nike Doernbecher Freestyle Collection. This partnership between Nike and OHSU Doernbecher Children’s Hospital, which has raised nearly $20 million in 15 years, gives young patients the opportunity to design footwear and apparel to support the children’s hospital and pediatric research. This year, children living with cystic fibrosis, muscular dystrophy, transplants and other serious medical conditions worked alongside Nike design teams to create a limited-edition collection that launches online and at select Nike retail and partner stores on December 15.

Kirsten Brown’s Nike Doernbecher Freestyle shoe. In her own words: “It’s motivation for others. Everyone survives in their own way. Big or small, we all survive.”

Kirsten’s shoe, a black Nike Air Max 97, features a red-violet swoosh and a can’t-miss-it SRVVR graphic on the side, along with the date of her heart transplant (5-18-16). A green ribbon symbolizing heart transplant awareness and a red ribbon signifying stroke awareness adorn the outsoles. She also designed a Nike jacket and a T-shirt emblazoned with the word “Survivor.”

Kirsten said designing her Nike Doernbecher Freestyle shoe was amazing, calling it “a once-in-a-lifetime experience.” During the creative process, she became friends with everyone involved. Raising awareness of pediatric stroke and transplant is important to her, so she made sure her Nike shoe conveys an uplifting message. Now that she’s an outpatient, she wants to inspire others who are facing medical challenges to recover quickly and leave the hospital as soon as possible.

Asked for words of advice, Kirsten is upbeat: “Stay positive throughout every situation. Try to find the light in everything.” Her plans for the coming year are to improve in what she’s doing right now.

These days, Kirsten takes the bus to high school every day by herself. Even though she’s still in recovery, the only obvious sign of her stroke and heart transplant experience is a foot brace, which helps stabilize her when she walks.

A fearless sophomore who loves playing baseball, studying science, going to the movies with friends and listening to the musical group Queen, Kirsten is not just surviving. She’s thriving.