Patient Story Videos You Shouldn’t Miss
Below, you will find eight videos that were created in 2015 that you should’t miss. These stories did not find their way onto our blog or other social media channels in the last year, so we wanted to be sure to give them some attention as there are some great stories in these videos.
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Jodie Walter was born with hypoplastic left heart syndrome, a complex and rare congenital heart condition that many children do not survive. But Jodie didn’t just survive, she’s thriving. Through her personal medical challenges and the heartache of family loss, she continues to overcome every obstacle she’s ever faced. Jodie says she found herself outside of her heart problems.
Three-year-old Brayden Newbold and his family make the thousand-mile journey from their home in the Bahamas to Cincinnati every three months for treatment of Laron syndrome, a growth disorder. The Newbolds say it is worth the travel after seeing results in the first year.
When a baby needs to be treated in the NICU, parents rarely have time to prepare. It’s been called the most intense roller coaster you’ll ever ride. This is the story of one father’s experience spending four months with his foster son in the Newborn Intensive Care Unit (NICU).
Research shows that kids like Henry Drayer, who was born with multiple complex heart defects, are at higher risk for neurodevelopmental delays. Once heart conditions are stabilized, it’s important to provide patients like Henry with individualized care and support. Our Heart Institute Neurodevelopmental and Educational Clinic (NDEC) team is one of only a few programs in the country designed to do just that. And because of the NDEC team, the Drayer family says they feel like they have the resources to give their son every opportunity in life.
The Kirby family can’t wait to hear their daughter Lakelynd Kirby cry again. She weighed only 1 pound, 2 ounces when she was born prematurely in 2013 and she’s had a tracheostomy to help her breathe since she was an infant. At first the trach seemed limiting to everything, but the Kirbys didn’t let medical conditions limit their daughter’s life. Instead, they’re enjoying all the little things.
“Don’t hold [kids] back from doing whatever it takes to help them fulfill their potential,” Steven’s mom tells other parents. Uncovering her own son’s passion took a unique path, but has resulted in something more rewarding than they could have ever imagined.
Zsolt Varga was born in Hungary with a condition unfamiliar to the doctors in his hometown. He had Hirschsprung disease and complications related to the painful, sometimes life-threatening gastrointestinal condition that blocks the intestines. Zsolt had surgery as a toddler, but his condition worsened. He had to be transferred by medical helicopter to Budapest. Eventually, his doctors referred him to Cincinnati Children’s for care. Our colorectal team met him in Serbia to do an initial surgery. Then two years ago, his family traveled to Cincinnati for follow-up care and a second stage surgery. Today, he’s home in Hungary and getting back to living one day at a time.
Max’s story is a little different because his is all about explaining HLH to kids in a way they can understand. HLH, or hemophagocytic lymphohistiocytosis, is a rare immune disorder. In patients with HLH, the immune system does not work as it should, but instead damages healthy tissue and organs. Treatment often requires a bone marrow transplant to replace the immune system. In this animated video, viewers follow Max, a cell, inside the human body.
Watch more videos online at www.youtube.com/cincinnatichildrens.