Patient Stories

All Articles in the Category ‘Patient Stories’

The Reality of Pediatric Stroke

Being the mother of a pediatric stroke survivor, I am thrilled that this month marks Pediatric Stroke Awareness Month in Washington state. As a nation, we have supported efforts of increasing awareness of stroke in general, however, pediatric stroke has received little awareness or research to date. Here we share our story in hopes of increasing awareness among the community, advocating for more resources and support for children and their families who have been impacted by stroke, and to provide hope to families starting out on this journey that our children can overcome vast obstacles.

Addison Hyatt survived a pediatric stroke at birth

Addison Hyatt survived a pediatric stroke at birth

Contrary to what most people believe, stroke is a potential risk for everyone, including children and teens. Stroke occurs at the highest rate in the first year of life, and is most common between the 28th week of pregnancy up until one month after birth. Approximately one in 1,600 to 4,000 newborns have a stroke each year. For children age 1 to 18, stroke occurs in 11 out of 100,000 kids and teens. I share this information not to create alarm, but rather to spread awareness. Pediatric stroke is often thought of as extremely rare; sadly it is not. I know far too well that it’s real, and we encourage other parents to understand its signs, symptoms and treatment options. Read full post »

Clinical Trial Offers Only Treatment Option for Girl with Hepatitis B

Esmee and Willa

Esmee (left) and Willa (right) pose for a photo.

A clinical trial was the only hope for Esmee, a little girl adopted from China. Read below about her story and the innovative research being done at Seattle Children’s Hospital and Research Institute to help those who would otherwise have no treatment option for chronic hepatitis B (HBV).

Renee Jones always wanted a little girl, so when the adoption agency called one day to tell Jones about Esmee and Willa, she was thrilled – two little girls instead of one!

She filed the paperwork for adoption and waited patiently to hear back. Read full post »

Promising Research Trials Find New Combination of Drugs Treat Underlying Cause of Most Common Form of Cystic Fibrosis

Dr. Bonnie Ramsey, director of the Center for Clinical and Translational Research at Seattle Children’s Research Institute and professor at the University of Washington

Dr. Bonnie Ramsey, director of the Center for Clinical and Translational Research at Seattle Children’s Research Institute and professor of Pediatrics at the University of Washington

Results from two phase 3 clinical trials published yesterday in the New England Journal of Medicine show that a new combination of medications can successfully treat the underlying cause of cystic fibrosis for patients age 12 and older with two copies of the F508del gene mutation – the most common form of the life-threatening, genetic disease found in over half of the cystic fibrosis (CF) population. Approximately 8,500 people in the U.S., and 22,000 people in North America, Europe and Australia, age 12 and older with cystic fibrosis carry this gene mutation.

The international trial, which studied more than 1,000 cystic fibrosis patients age 12 and older, revealed that a combination of the drugs Kalydeco (ivacaftor) and lumacaftor, an experimental drug that has not yet been approved by the Food and Drug Administration (FDA), successfully treated the defective CF protein and improved lung function. The drugs also helped patients achieve a 40 percent reduction in pulmonary exacerbations, the leading cause of death in cystic fibrosis patients. Read full post »

Born with Organs on the Outside, Onora is now a Happy, Healthy Toddler

Onora and Mom Reading

Kristen reads to Onora.

This week, in honor of Mother’s Day, we’re sharing stories about mothers who have found hope through difficult diagnosis and became advocates for other parents and families.

Kristen Moriarty of Missoula, Mont., was 22 weeks into her pregnancy with her daughter, Onora, when a routine visit to their OB-GYN turned into shock and concern. Onora was diagnosed with omphalocele, a rare condition in which the intestines or other organs grow outside of the baby’s body and the umbilical cord forms a sac around them.

Moriarty and her husband had a big decision to make – where would they go to receive care for their little girl? Montana wasn’t an option, so they packed up all their belongings and moved. Read full post »

A Mother’s Journey to Find Hope for Her Baby Diagnosed with CDH

IMG_20150223_091708440This week, in honor of Mother’s Day, we’re sharing stories about mothers who have found hope through their child’s difficult diagnosis and become advocates for other parents and families. Read below about Kara Strozyk’s incredible journey to find a silver lining in her son’s life-threatening condition.

Kara Strozyk was expecting a normal ultrasound at a routine prenatal appointment with her OB-GYN in Olympia, Wash., 19 weeks into her pregnancy. What should have been one of the best days of her life, quickly turned into one of her worst. “How does he look?” Strozyk asked the ultrasound technician.

The ultrasound image revealed the unthinkable, an abnormality with the baby’s stomach, small and large intestine, spleen and liver; they appeared to be in his chest. Strozyk was in disbelief. Her baby was prenatally diagnosed with a congenital diaphragmatic hernia (CDH), a hole in his diaphragm, a potentially life-threatening condition.

The advice she received only added more fear to the diagnosis: “Stay off the internet.” Read full post »

This Schoolhouse Rocks: Inside the Classroom at Seattle Children’s

Thanks to the hospital school, Brighton Smith learned to believe in herself again after cancer robbed her of her confidence. Help us celebrate the teachers who shine the light of learning – and personal growth – into the dark corners of illness. GiveBIG to Seattle Children’s on May 5 (GiveBIG and National Teacher Day). The Seattle Foundation along with a generous anonymous donor will help you stretch your gift by matching donations dollar-for-dollar, up to $10,000. Your generosity provides concrete resources like laptops and textbooks for the hospital schoolroom.

Brighton Smith, 11, visits with Lisa Schab, the teacher in Seattle Children's Schoolroom she calls her "hospital mom."

Brighton Smith, 11, visits with Lisa Schab, the teacher in Seattle Children’s Schoolroom she calls her “hospital mom.”

Brighton Smith didn’t feel well. Several weeks of battling chills and fatigue had left the 11-year-old wanting to sleep all the time. Her mom, Cassia Smith, worried she might have mono or even be depressed. Then a trip to her primary care provider yielded a very scary turn of events: a referral to Seattle Children’s and a diagnosis of leukemia – all in the same day.

Once on the Cancer Care Unit, everything but Brighton’s treatment fell by the wayside; that’s when Lisa Schab, a middle-school teacher from Seattle Children’s School Services, dropped by Brighton’s hospital room. Read full post »

Parker’s Journey From Heart Transplant to Race Track

image18Parker Rana, 15, has truly overcome the odds to get to where he is today. Born with multiple heart defects, Parker grew up in and out of the hospital. But now, he’s a thriving teenager with an incredible story of hope.

Below is Parker’s story: from hospital bed to trackside, cheering on his favorite racing team, The Heart of Racing.

An unexpected delivery

Jaydine Rana, Parker’s mother, was expecting a healthy baby boy when she delivered Parker on June 2, 1999 in Mt. Vernon, Wash. Unfortunately, she got some unexpected news that day. Parker was born with a combination of four heart defects – a hole in his heart, a missing pulmonary artery and valve, an enlarged ventricle and an overriding aorta. He was airlifted to Seattle Children’s Hospital shortly after birth for treatment. Read full post »

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 »