Patient Stories

All Articles in the Category ‘Patient Stories’

Madeline’s Mom Finds Beauty in Tragedy Through Journaling Program

Madeline Holt with her mother, Meagan

Madeline Holt is a bubbly, positive 3-year-old who likes to cuddle, listen to music, play with blocks and cars, and, in typical toddler fashion, do what she wants to do when she wants to do it. She is also strong and determined to beat all odds stacked against her.

At age 1, Madeline was diagnosed with Zellweger syndrome, a rare genetic condition that destroys the white matter in her brain. The condition leads to a number of other complications, including seizures, respiratory problems, liver failure and even brain hemorrhages. Most children with Zellweger syndrome do not live past 1.

There’s no treatment for Zellweger syndrome. Instead, caregivers at Seattle Children’s treat Madeline’s symptoms as they occur. Madeline is blind, has very limited mobility now and has a feeding tube. Despite these obstacles, she has mastered 50 different sign language signs.

“You learn to accept the disease for what it is,” said Meagan Holt, Madeline’s mother. “It’s terrible, but for today, she’s here and that’s all we care about.” Read full post »

Team Provides Outpatient Mental Health Therapy for Deaf and Hard-of-Hearing Patients

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Bedolla (left), 18, has been seeing therapist Julia Petersen from time to time since she was 8 years old.

Yajaira Bedolla was 11 months old when her parents learned she was deaf.

Living in Uruapan, Mexico, Bedolla’s parents searched their town for resources to help with the unknowns of raising a deaf child. The limited resources they found focused on teaching deaf children just to speak, rather than also learn sign language.

They expanded their search and, in doing so, briefly moved to California and back to Mexico before landing in Seattle when Bedolla was 8. Here, they found Seattle Children’s and Petersen, a mental health therapist who provides outpatient therapy and support for deaf patients and their families. Read full post »

Chronic Migraines in Kids: A Family Works Past the Pain With Seattle Children’s Researcher

Tyler Stewart has struggled with chronic migraines all his life. With Dr. Emily Law’s behavioral treatment, he has new tools to reduce the migraines.

Tyler Stewart was 5 when he had his first migraine. He stepped out of class to get a drink of water, got a headache and vomited. His mom, Kelly Stewart, got a call from the school. The nurse suspected Tyler had a migraine.

Tyler, now 15, says chronic pediatric migraines affected his entire childhood experience, from school to sports.

“The day I had my test to qualify for my black belt in tae kwon do, I had a migraine,” he said. “I got the black belt, but I had to push through a migraine to do it.”

This past summer, Tyler began to see Dr. Emily Law, a psychologist in Seattle Children’s Pain Medicine program and a researcher at Seattle Children’s Research Institute. She studies the use of behavioral interventions and screening tools in treating pediatric migraines, and recently received a grant from the National Institutes of Health to support her research. Read full post »

New Year, Fresh Start For a Little Girl With a Song of Her Own

Gabby and KimMilestones deserve a celebration. At least that’s what Seattle Children’s Pediatric Advanced Care Team thought when 9-year-old Gabby Krueger, a longtime patient at Seattle Children’s, received some good news the week before Christmas. After 14 weeks in the hospital, doctors gave the family the green light to go home.

“We’ve been here a really long time,” said Kim Sistek, Gabby’s mother. “We were really excited to go home.”

The news came after Gabby showed improvement in motility. For three years, Gabby has needed assistance going to the bathroom. She’s needed to use enemas to pass stool on her own. Her parents were beginning to have conversations with doctors about what Gabby’s life would look like if she lost motility. Her outcome was looking bleak. But just a couple weeks ago, Gabby made an improvement. Read full post »

Russell Wilson and Amazon Bring Holiday Cheer to Seattle Children’s

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Families at Seattle Children’s Hospital and Odessa Brown Children’s Clinic (OBCC) received a special delivery this week thanks to Seahawks quarterback Russell Wilson and Amazon. Two larger-than-life gift boxes filled with toys, Amazon devices and gift cards brightened the day for kids at the hospital and OBCC, a community clinic located in Seattle’s Central District which provides medical, dental, mental health and nutrition services to families, regardless of their ability to pay.

Partnering with Russell Wilson

Tuesdays are usually an exciting day at Seattle Children’s because of Russell Wilson’s weekly visits to the hospital, but this Tuesday’s visit was extra merry. Christmas came early for patients and families at Seattle Children’s. And Wilson invited a special guest to help spread even more holiday cheer, Ciara.

Wilson’s, Why Not You Foundation and Amazon partnered together to donate Amazon devices, like the Fire HD and Kindle Paperwhite, to every patient at the hospital. Wide eyes and big smiles filled the hospital today and made today’s blue Tuesday one of the brightest and most festive of the year. Read full post »

Seahawks Brighten the Day for Patients at Seattle Children’s

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The Clifton family poses with Seahawks players in the playroom at Seattle Children’s.

Yesterday, patients and families at Seattle Children’s, home to some of the loudest, proudest and smallest 12s, received a special visit from Seattle Seahawks players and members of the Sea Gals as part of the team’s annual visit, Captain’s Blitz. It made Blue Tuesday, the brightest and bluest day of the week at the hospital, even more spirited than usual as patients and families got to meet and greet with their favorite football players.

A warm welcome

Olivia Clifton, 6 months old, was nothing but smiles as she posed with her mom and dad and a group of Seahawks players in the inpatient playroom at Seattle Children’s.

Although she’s too young to know who the players are, she’ll have photos that will last her family a lifetime. Read full post »

Patients Harness the Force at Seattle Children’s Thanks to Star Wars

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Darth Vader introduces himself to patient Noah Mulllin.

Patients and families at Seattle Children’s didn’t have to travel to a galaxy far, far away to follow in the footsteps of Luke Skywalker, famed Jedi Master from Star Wars. Jedi masters made a special trip to the hospital today to help patients and their families harness their inner Force through a private training session.

And that’s not all. Several Star Wars characters from the Light and the Dark side also made a surprise appearance at the hospital. Patients, families and staff were buzzing over the sight of Darth Vader and R2-D2 walking the halls of the hospital.

The Force was definitely awakened as children smiled ear-to-ear as they too became Jedi Masters, each one empowered to overcome whatever lies ahead of them.

Read full post »

Six Things to Expect in the Neonatal Intensive Care Unit (NICU)

Every new mom hopes to have a healthy baby who enters the world right on time. But unfortunately, deliveries don’t always go as planned, and some babies arrive too soon. Preterm birth, which according to the CDC occurs when an infant is born before 37 weeks of pregnancy, affects about one out of every 10 infants born in the U.S. each year. Approximately 50,000 of those infants are born very premature, at less than 28 weeks of gestation.

Sarly Dickinson knew there was a chance her little boy may come early due to complications she experienced during pregnancy, but she held out hope that he would make it to term. Unfortunately, David entered the world at just 25 weeks. Requiring surgical intervention for hydrocephalus, a condition where fluid builds up in the brain, he was transferred to Seattle Children’s Level IV Neonatal Intensive Care Unit (NICU) where he received care for three months. While Dickinson said 25 weeks was much too early, she was thankful David’s birth story wasn’t any scarier.

“My water broke at just 23 weeks and I was terrified because I understood the risks of having a baby that early, including the terrible reality that we may be faced with having to let him go,” Dickinson said. “I immediately went on bed rest and luckily he held out a little longer and arrived two weeks later, weighing a tiny 1 pound, 7 ounces.” Read full post »

Volunteer Gives Back to a Place He Calls Home

Pinwheels for PreventionEvery Tuesday and Friday, like clockwork, you’ll find volunteer Kien Luu at Seattle Children’s – either greeting visitors in the volunteer office with a warm, friendly smile, or making children laugh and play in the outpatient sibling playroom, helping them to forget for a moment where they are. But what many may not know is that Luu has a special connection to not only the hospital, but also the patients and families because he used to be a patient himself.

It’s from that experience that he chooses to give back to the place that he is most thankful for; for the place that saved his life thirty two years ago.

“My life is a blessing,” Luu, 38, said as he reflected on his time at Seattle Children’s. Read full post »

Princess Alexis Slays Dragon, Fulfills Wish to Help Other Kids With Cancer

Like many kids, 6-year-old Alexis has big dreams. But while some kids dream about defying gravity as an astronaut, or being the star ballerina in the Nutcracker, Alexis dreams of helping other kids like her and raising awareness of pediatric cancer by sharing her story. And for Alexis, there is no better way to reach other kids than with a cartoon that illustrates her journey.

Thanks to Make-A-Wish Alaska and Washington, this past weekend her dream came true. Alexis received the red carpet treatment at the world premiere of her very own cartoon at Cinerama in downtown Seattle. She was the star of the night as her friends, family and many others gathered to watch Princess Alexis slay the mighty dragon, a ferocious symbol that represented her fight with leukemia.

“It was incredible to see her wish come true and we’re just so grateful,” said Alexis’ mom, Angela. “Alexis was all smiles the entire night and felt like a real star who was making a difference. We’ve always known her to be a very brave little girl and now others who don’t know her can see it too.” Read full post »