With 2018 in full effect, On the Pulse is taking a moment to hit rewind to share five stories that might have floated beneath the flurry of headlines in 2017.
We invite you to take a look back at some of last year’s stories that inspired us and gave us hope.
Courtesy of Amanda De Vos Photography
Amanda De Vos, a professional photographer, was reviewing shots she took of her 15-month-old identical twin daughters, Julia and Jemma, when a photo of Julia caught her attention.
De Vos would learn that the photo she took of Julia would help to identify a rare eye cancer, retinoblastoma, that was stopped in its tracks with an innovative treatment at Seattle Children’s.
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Ben, 19 months old, shows off his Stormtrooper prosthesis.
With every step 19-month-old Benajmin (Ben) Bronske takes, a legion of Stormtroopers lead his way.
Born into a family of avid Star Wars fans, Ben has become a fan as well. With an infectious smile, while wearing a shirt that says, “I’m a Trooper,” Ben proudly shows off his leg. It was uniquely made just for him – it’s covered in Stormtroopers.
“He’s got a really cool leg and a story to go with it,” said Sarah Bronske, Ben’s mother. Read full post »
Cassidy Huff, 15, enjoys recording music.
More than a year ago, 15-year-old Cassidy Huff was celebrating her birthday at Seattle Children’s on the eve of her 39th surgery. She was doing what makes her happiest – singing and playing her ukulele. She performed in front of a small crowd made up of her friends, family and medical team. One of the songs she sang was called “Halo,” a parody of Adele’s popular song “Hello,” and an ode to the metal device around her head that would soon be removed.
“When I’m playing I don’t think,” said Cassidy. “Everything around me disappears, and it’s just me. Music has always been my outlet. It tells a story and gives people an inside look into who I am.”
Today, Cassidy is preparing for another performance, this time for a much larger crowd. She’s working with Grammy-winning composer Mateo Messina on an original song for Messina’s 20th annual Seattle Children’s benefit concert called Epoch. She’ll be performing the song alongside the Northwest Symphony Orchestra in front of nearly 2,500 people at Benaroya Hall. Read full post »
18-month-old Casey Lang defied incredible odds after an aggressive infection threatened his life.
Sara Chenault and her husband, Ed Lang, held their 15-month-old baby, Casey Lang, tightly as they sat outside the hospital on a warm sunny day in July. Casey giggled as he watched the wild rabbits hop through the grass. His eyes lit up and he squealed as he reached for the basketball his dad gently rolled toward him. Casey couldn’t seem happier, but his parents were beside themselves – they were saying goodbye to their baby boy.
“His situation was dire and we didn’t want Casey’s last few hours spent in a hospital room,” said Sara as she tearfully recalls that heartbreaking afternoon. “We wanted our last few hours together to be meaningful so we took Casey outside to let him just enjoy being a little boy.”
Casey and his family had already endured a rollercoaster experience throughout an unexpected 5-week hospital stay. They thought they were nearing the end of their time at the hospital and that Casey may finally be out of the woods. However, that morning everything changed. It became clear the worst was yet to come. Read full post »
Taylor Haines performs a contemporary dance called “Power of Vulnerability” with another dancer, Vasco Vj Vea.
When 19-year-old Taylor Haines performs, she tells a beautiful story with her body through dance. She leaps, turns and flips across the stage without missing a beat. It’s not until you look a little closer that you’ll notice there’s more to her story than meets the eye. Taylor was born with birth defect called fibular hemimelia, and she has a prosthetic leg.
“Fibular hemimelia is a congenital birth defect that causes complete or partial absence of the fibular bone, the smaller and thinner bone in the lower leg,” said Dr. Vincent Mosca, chief of foot and limb deformities at Seattle Children’s. “It occurs in about one in 40,000 children. These children also have a shortened and bent tibia, the larger and thicker bone in the lower leg, and in many cases, absence of toes on the affected limb. The thigh bone is also slightly shorter than the other side. All the other body parts are normal.” Read full post »
In honor of National Dog Day, On the Pulse is recognizing a special four-legged volunteer who has provided comfort to patients at Seattle Children’s every week for more than 11 years.
If Abe had the ability to talk, he would likely share powerful stories about the thousands of kids he has met throughout his 11-year career as a registered therapy dog.
The road to becoming a therapy dog isn’t easy for most loyal companions, but for Abe, it was his calling.
“I always said he was born to be a therapy dog,” said Judith Bonifaci, Abe’s owner and trusty handler. “From the moment I met him, I could tell he was an old soul who had a special purpose in life.”
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Through Seattle Children’s Pediatric Pain Rehabilitation Program (PReP), physical therapist Sharon Yurs challenges Wesslee Holt to a game of hoops, with some extra balance work added in.
Last spring, Wesslee Holt rolled his ankle at his middle school in Shelton, Washington. The 12-year-old is a dedicated member of his cheer team and was eager to return to the squad quickly. He followed his doctor’s instructions to immobilize the foot and wear a boot — but his pain only increased over time.
Wesslee started using a scooter to keep weight off his foot and rested it as much as possible. Nothing seemed to work. His skin became splotchy and red, and was so sensitive to touch that he couldn’t put a sock or shoe on. He felt depressed and anxious, pulled out of cheer team completely and even left school.
His mother, Steph Fyfe, knew it was time for a different approach. “People wanted to put Wesslee on supplemental security income and call him disabled, but I knew there had to be a way for him to get better,” she said.
She was referred to Seattle Children’s Pain Medicine Clinic and learned Wesslee was suffering from complex regional pain syndrome (CRPS), which sometimes accompanies a routine injury and causes the nerves to send extreme pain messages to the brain. The good news is that Seattle Children’s was able to offer Wesslee a unique treatment option: the Pediatric Pain Rehabilitation Program (PReP).
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My name is Makenna Schwab and I’m 14 years old. Over the course of my life, I have been treated at Seattle Children’s Hospital where an amazing team of doctors have performed over 15 life-changing and life-saving surgeries for me.
I was born with a rare connective tissue disorder called Larsen syndrome, which causes dislocations in my joints, instability in my spine and trouble with my breathing. I’ve had to face a lot of challenges, but rather than let my disability hinder me from what I love to do, I decided to embrace it and try to use my experience to create something positive.
When I was 8 years old, I asked my mom if I could sell cookies and lemonade and donate all of the proceeds to Seattle Children’s as a way to give back. Since then, I’ve worked on a variety of projects — from bake sales and toy drives to making packs of food for inpatient families. The money I’ve raised has helped to provide uncompensated care to families at Seattle Children’s. It has also allowed me to provide red wagons for patients in the hospital and purchase new medical equipment to help treat kids like me.
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Longtime Seattle Children’s patient Makenna Schwab excitedly waits to cut the the ribbon off the low dose radiation X-ray machine she raised $25,000 for.
Patients at Seattle Children’s are benefiting from yet another fundraising project from 14-year-old Makenna Schwab, whose fearless determination in raising thousands of dollars has allowed the hospital to purchase a special X-ray machine to help treat other kids like her.
To celebrate Makenna’s latest fundraising project, which collected $25,000 for the purchase of a 3D low dose radiation X-ray machine called the EOS, Seattle Children’s threw her a heartfelt thank you party. At her celebration, there was no shortage of smiles, laughter and hugs — all for one special teen whose enthusiasm to give is boundless.
“This was more than I ever expected,” said Makenna. “It was so great seeing everyone who has supported me over the years in one room. It made me feel really special.”
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Kenley Teller, 6, snowboards with two prosthetic legs.
Watch 6-year-old Kenley Teller snowboard down a slope and you’ll notice two things right away: a big smile on her face and her fiery red hair billowing in the wind beneath her helmet. What is not apparent are her two prosthetic legs.
“She’s free when she snowboards,” said Kenley’s mother, Mary Teller. “I don’t want to say she feels normal, because how do you define normal anyway? She may need to do things a little different than other people, but she can still do them. I’m constantly in awe of her.” Read full post »