ROBERTSDALE, Ala. — A packed arena and a steady stream of riders turned out for the Run for Resilience Barrel Race, a community fundraiser held to support a Baldwin County toddler undergoing treatment for a rare and painful bone disease.
The event benefited Eleanor Faith Butler, who recently returned home to Baldwin County after undergoing surgery in Atlanta to treat osteogenesis imperfecta type III, a severe form of brittle bone disease that leaves patients vulnerable to frequent fractures. Eleanor’s mother, Tasha Johnson, said the race went off without a hitch and that the turnout left her overwhelmed with gratitude.
A Long Road of Surgeries and Recovery
Eleanor has suffered multiple fractures since birth, and her family has traveled across the country seeking specialists who could help improve her quality of life. Her most recent procedure, a cervical spine surgery performed at Children’s Healthcare of Atlanta, is part of an ongoing effort to stabilize her condition. She remains on a feeding tube and must wear a protective halo brace until doctors confirm her spine has stabilized.
“When Eleanor first got sick, we felt so alone,” Johnson said. “We were suddenly living in a hospital, trying to navigate surgeries, rehabilitation, feeding tubes and everything that comes with having a medically complex child. We never imagined our little girl would bring together an entire community the way she has.”
Community Steps Up
Since Eleanor’s diagnosis, Baldwin County residents have organized a series of fundraisers, meal trains and awareness campaigns on the family’s behalf, culminating in the barrel race. Johnson said the support, from purchased T-shirts to raffle donations and prayers, has carried the family through some of its hardest moments.
“Every shirt that’s been bought, every prayer that’s been prayed, every message, every raffle donation, every person who shows up, it’s a reminder that we’re not carrying this alone,” Johnson said. “Of course, the financial support helps more than people probably realize, but what has meant just as much is knowing that people believe in Eleanor. They celebrate her victories right alongside us. They cry with us on the hard days and cheer with us on the good ones.”
Johnson said the family knows Eleanor’s recovery will be a long process, but she said the community’s response has given them hope during one of the most difficult seasons of their lives.
“I don’t think we’ll ever be able to fully express how grateful we are,” Johnson said. “We hope everyone knows that this isn’t just support for one night or one event, it has given our family hope during one of the hardest seasons of our lives. We will never forget the kindness this community has shown us, and we hope one day we’re able to pay that kindness forward to another family who needs it.”
Osteogenesis imperfecta, sometimes called brittle bone disease, is a genetic disorder that affects the body’s ability to produce collagen, leaving bones fragile and prone to breaking from minor stress. Type III is among the more severe forms of the condition, often requiring multiple orthopedic and surgical interventions throughout a patient’s life.