Hope Kern's Home Run for Life
Hope is a 14-year-old who embodies a love of adventure and a real zest for life. When Hope was born, she was diagnosed with an ultra-rare and severe genetic disorder. The doctors in Montana, where the family lived at the time, only expected her to live a few days. But
Hope is a 14-year-old who embodies a love of adventure and a real zest for life. When Hope was born, she was diagnosed with an ultra-rare and severe genetic disorder. The doctors in Montana, where the family lived at the time, only expected her to live a few days. But Hope was a fighter.
Less than 50 people in the world have been diagnosed with Shprintzen-Golderg syndrome, which affects the connective tissues, causing the body to be in a constant state of repair.
“Most of her life is just therapies and doctor’s appointments,” explained Hope’s mother, Melissa.
When Hope was three, the family moved to Indiana, giving them access to the health expertise she needed. She started physical, speech and occupational therapies at Beacon Children’s Hospital that have continued to this day.
“The therapy department at Beacon Children’s is just amazing and the therapists are phenomenal,” said Melissa. Hope’s joints easily dislocate, so her therapy requires great care. “I know she’s safe with them. I know they love her.”
Hope’s parents are also deeply grateful to pediatric neurosurgeon Daniel Fulkerson, MD, Beacon Medical Group North Central Neurosurgery South Bend. He performed lifesaving surgery to address severe spinal cord thinning and damage at her Hope’s brain stem, and he continues to monitor her spine.
“It’s just an incredible gift that under one roof Beacon has all of the specialists that are really trained well and work well with children. It’s just a huge blessing,” Melissa said.
You’d never suspect Hope has experienced such difficulties, given her upbeat attitude toward life.
“She’s the most amazing, strong, brilliant, resilient person I’ve ever met. She recovers from a huge surgery better than most people do from a cold,” Melissa proudly shared. “She’s always on the go. She loves exploring and just experiencing new things. Not much can keep her down.”
Beacon Children’s Hospital is Michiana’s only community-owned, not-for-profit hospital designed just for kids!
Home Run for Life 2024 Dates (click each date to purchase tickets).
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