Philanthropy

The Marvin family

Imagine living every day of your life waiting for your child to have their next seizure. This is often the reality for parents of children with intractable epilepsy – a chronic form of epilepsy that can’t be controlled by medications alone. Every moment is plagued by uncertainty, and the world quickly becomes a place filled with barriers where hope and opportunity used to be.

This scenario is something with which James Marvin and his wife Joana are all too familiar. When their daughter, Charlotte, was diagnosed with epilepsy after having her first seizure at just 14 months old, this became their family’s world.

“We called it ‘the antagonist,’” said Marvin. “Charlotte would usually have a seizure every couple of days, but any time she was stressed, tired or sick, the antagonist would come out. It was so difficult to live our lives just waiting for the other shoe to drop, and there was no end in sight.”

That was, until five years later when they traveled 3,000 miles from their home in Virginia, to seek treatment at Seattle Children’s Hospital that held the promise of ending Charlotte’s seizures, hopefully for good.

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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 »

Seattle Children’s new CEO, Dr. Jeff Sperring

This week, the next chapter of Seattle Children’s journey begins with the arrival of our new CEO, Dr. Jeff Sperring. Even though it’s his first week on the job, he is no stranger to leading a world-class pediatric hospital. Sperring most recently served as president and CEO of Riley Hospital for Children at Indiana University Health, one of the largest children’s hospitals in the U.S. He was at Riley since 2002 and also served as Riley’s chief medical officer, associate chief medical officer and director of pediatric hospital medicine.

Sperring earned his medical degree from Vanderbilt University School of Medicine and was a pediatric resident at the Naval Medical Center San Diego. After residency, he served as a United States Navy Medical Corps officer in Twentynine Palms, Calif., for three years. Read full post »

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 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 »

The Heart of Racing team is focused on two things – winning races and raising money for kids at Seattle Children’s. They race, and win, for children who need complex cardiac care. And their checkered flag won’t wave until they’ve helped to fix every little heart that needs mending. To date, they’ve raised more than $5 million for Seattle Children’s Heart Center, and helped to fund a new state-of-the art cardiac catheterization laboratory at Seattle Children’s which opened earlier this year.

“When you put the right people together, there’s nothing you can’t do,” said Don Kitch, who founded the Team Seattle Guild at Seattle Children’s and The Heart of Racing Team. “There’s nothing like Seattle Children’s Cath Lab in the world, and we made it happen with a race car! It’s absolutely incredible to think about. We’re giving kids the chance for a happy, healthy life.” Read full post »

Parker 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 »

Kristina Spencer with duffels she has filled for acutely abused children discharged to foster homes.

When Kristina Spencer joined the Seattle Children’s Hospital Protection Program team as its senior administrative assistant last summer, she took on another, unofficial role: director of duffels.

The duffels in question – dozens of brightly colored, kid-sized bags stashed around the Protection Program’s offices – had been purchased with grant money and were phase one of Duffels for Discharge, a project aimed at easing the transition for abused children discharged from Seattle Children’s straight into the foster care system. Read full post »

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 »

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, 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 »

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 »