Patient Stories

All Articles in the Category ‘Patient Stories’

Fighting a Nameless Battle, Racing for Research

Alyssa Bowen

Alyssa Bowen

Alyssa Bowen appears to be an average 15-year-old on the outside, but inside, her body is fighting a civil war. Her immune system is hyperactive, creating antibodies to attack her own blood cells, platelets, white blood cells and tissues. Despite the extensive efforts of doctors and nurses, they have not been able to offer Alyssa an exact diagnosis.

Alyssa has been coming to Seattle Children’s Hospital from a very young age. She has had many hospitalizations and a variety medications and treatments to help her manage her puzzling condition and the pain associated with it. Read full post »

Brother Donates Kidney to Sister, “I Always Knew I Would Be the One”

Anna and Andrew Hug - Web

Andrew and Anna Copley

In honor of Organ Donor Awareness Month, we’re sharing the story of Anna and Andrew Copley. Read below about Anna’s journey to transplant and the bond that will tie two siblings together forever. 

Anna Copley, 15, and her family have known since Anna was a baby that she might need a kidney transplant. At only 3 weeks old, she contracted severe respiratory syncytial virus (RSV), a virus that infected her lungs and breathing passages. Her kidneys failed due to the virus and even though she recovered, her kidneys were damaged beyond repair. As Anna grew up, her kidneys got progressively worse, unknowingly to the Copley family.

“We are thankful that Anna’s kidney’s ‘failed slowly,’” said Rebecca Copley, Anna’s mother. “Her kidney failure progressed so slowly, that her body adjusted, and for her, she only knew this as normal.” Read full post »

My Little Brother, My Greatest Inspiration: Celebrating the 1-Year Anniversary of Seattle Children’s Alyssa Burnett Center

Mikey

Mikey at high school graduation

April marks the 1-year anniversary of the grand opening of Seattle Children’s Alyssa Burnett Adult Life Center. The Alyssa Burnett Adult Life Center hosts year-round classes for adults with autism spectrum disorder (ASD) or other developmental disabilities. And though it’s only been a year, the Alyssa Burnett Center has already seen great success. Tammy Mitchel, program manager, recounts below her hopes and fears from day one and shares some of her favorite milestones from the past year.

Nearly one year ago, as I was driving to the grand opening of the Alyssa Burnett Adult Life Center, my head swirled with thoughts, hopes, dreams and – admittedly – fears for this journey to open a center for adults with autism. Would it be possible to thoughtfully offer classes to adults with autism and serve a wide spectrum of ability levels? Could we teach adults who had never been in a kitchen how to cook for themselves? Would we be equipped to handle even the most challenging behaviors? And most importantly, could we create a community where all of this could happen under one roof?

I’m so happy to say one year later that yes, we could. And we did. Read full post »

Teen Offers Hope to Others Living with Crohn’s Disease

Lizzy Hiking

Elizabeth doesn’t let Crohn’s slow her down, enjoys hiking.

Elizabeth McIntosh, 19, has been through a lot to get to where she is today. Diagnosed with Crohn’s disease, one of the most common types of inflammatory bowel disease (IBD), at age 2, she felt like she was never going to be able to have a normal life – one uninterrupted by Crohn’s flare ups and debilitating abdominal pain.

But after undergoing surgery to remove more than three feet of her colon, she’s finally living the life she’s always hoped to live and wants to offer support to others living with Crohn’s.

“Never lose hope,” said McIntosh, who’s been a patient at Seattle Children’s since diagnosis. “You may have a long journey ahead of you, but you always have to have hope. It will get better.” Read full post »

Fashion Show Helps Children and Teenagers End Ostomy Surgery Stigma

Lizzy

Elizabeth McIntosh, 19

A unique fashion show took place at Seattle Children’s Hospital this weekend during the Inflammatory Bowel Disease (IBD) Conference, presented by the Northwest Chapter of the Crohn’s and Colitis Foundation of America and Seattle Children’s. To help end stigmas around ostomies, eight children and teenagers with inflammatory bowel disease, ages 8 to 20, walked the runway styled head-to-toe in the latest spring fashions by Nordstrom. Four of the children in the fashion show had ostomies, two did not have ostomies, and two of the models have IBD, but do not have an ostomy.

The only question was: did the audience know which models had ostomies and which didn’t?

The answer was a resounding “No.” Read full post »

Disconnecting the Brain, Reconnecting with Life

Sage Taylor was born with a severe malformation in the right hemisphere of her brain – a condition that caused her to have hundreds of tiny “micro” seizures every day. Here, mom Sam Rosen reflects on their leap of faith with a neurosurgeon at Seattle Children’s and how Sage’s life took a dramatic turn for the better.

Sage Taylor

Sage Taylor, now 9 years old, came to Seattle Children’s soon after she was born because she was having hundreds of tiny seizures each day.

In October 2005 my husband Don Taylor and I were blessed with a second daughter. All prenatal tests were normal and my delivery was easy. She was perfect, though more restless than our older daughter and not as good of a sleeper.

Three weeks after Sage came into the world, I was taking a post-partum class for new moms. The nurse instructor took me aside and encouraged me to take Sage to Seattle Children’s as soon as possible for an EEG – a test that measures and records the brain’s electrical activity. She explained she thought Sage had a very slight jerkiness of movement in her arms and legs that might not be normal.

And so began our journey with the incredible doctors and nurses at Seattle Children’s. Read full post »

Genetics Research Improves Diagnosis, Treatment of Rare Metabolic Diseases Around the World

Dr. Sihoun Hahn led a collaborative research study which helped a 10-year-old girl walk for the first time in her life.

Dr. Sihoun Hahn led a collaborative research study which helped a 10-year-old girl walk for the first time in her life.

A collaborative research study led by Dr. Sihoun Hahn, director of the Biochemical Genetics program at Seattle Children’s and an investigator within Seattle Children Research Institute’s Center for Developmental Therapeutics, has changed the lives of children around the world and helped a 10-year-old girl walk for the first time.

Research answers a parent’s prayer

Bokyung Kim, a 10-year-old living in Korea, spent most of her life confined to a wheelchair. Doctors suspected that she suffered from muscular dystrophy, but were unable to diagnose her condition. Bokyung’s parents prayed that their daughter would walk one day. So when they had the opportunity to enroll Bokyung in a collaborative research study between Seattle Children’s Research Institute, University of Washington School of Medicine and Seoul National University College of Medicine in Korea, her parents were eager to participate.

“This family never lost hope for their child,” Hahn said. “And neither did we.” Read full post »

Music Therapy: Treating the Souls and Spirits of Patients

David Knott and Betsy Hartman may not wear a white coat or operate a stethoscope, but for patients at Seattle Children’s, they offer a unique kind of medicine in the form of music. Both board-certified music therapists, Knott and Hartman pair their musical talents with their passion to help heal patients at Seattle Children’s Hospital through music therapy.

Music therapy is the use of music to achieve non-musical goals, such as reducing the perception of pain, providing opportunities for non-verbal expression and facilitating rehabilitation and relaxation. Knott and Hartman use singing, listening to music and playing instruments to help treat patients of all ages spanning a variety of health issues. Read full post »

NASCAR Driver Kasey Kahne Surprises Kids at Seattle Children’s, Supports Strong Against Cancer

Nicolas Tobias - Web

Kasey Kahne today took some time away from the race track to visit patients at Seattle Children’s Hospital. The NASCAR Sprint Cup Series driver, and Enumclaw, Wash., native made a surprise visit to the hospital after announcing that he’ll be teaming up with Seattle Seahawks quarterback Russell Wilson to help put an end to childhood cancer by choosing Strong Against Cancer as this year’s beneficiary of their fundraising event, The DRIVE.

With toys in hand, he brought much needed smiles and brightened the day for patients and families. The hospital was revving with excitement as Kahne met with kids and teens in a race of their own – a race to feel better and get back to life outside the hospital walls. Read full post »

Captain America Joins Friend Chris Pratt to Surprise Kids at Seattle Children’s

Marvel superhero Chris Evans (Captain America) and friend Chris Pratt (Star-Lord) today made good on a friendly bet that started between the two on Twitter in January after the National Football League playoffs.

The hospital was abuzz as Evans and Pratt brought joy to patients and families at Seattle Children’s. Much like their superhero alter egos, they saved the day in the eyes of the children and teens at the hospital. Read full post »