Shriners Priority - Ben & Others

On April 25th at our Spring Ceremonial, in Farmville, NC our Sudan Mini Rig Parade Unit met Ben and his parents.  After a short visit with this “Shriner’s Kid”, Ben, was voted into the membership as an Honorary Member of the Mini Rigs, and presented his baseball cap!  This is a story from his parents, Caitlin and Justin and how we changed an entire family’s life! 

“On August 17, 2023, during my anatomy ultrasound, we learned that Ben had a right leg anomaly.  We were overwhelmed with fear—unsure of what the future would hold or how we would make sure he would receive the care he truly deserved!

Not long after, we met a local Shriner who welcomed us with open arms and guided us to Shriners Children’s in Greenville, SC.  Before Ben was born, we met with Dr. Westberry, who reviewed the ultrasound and patiently answered our many questions, bringing us comfort during such an uncertain time.

After Ben was born, he was officially diagnosed with Fibular Hemimelia – a rare congenital condition where part or all of the fibular bone is missing or underdeveloped.  Ben’s fibula was significantly shortened, causing his right leg to, be much shorter than his left and preventing his ankle from forming properly.

Following multiple visits to Shriners Children’s for consultations, X-rays, and developing a care plan, we made a difficult but necessary decision to move forward with surgery.  At one year old, Ben underwent his first surgery with the amputation of his right leg.  We stayed at Shriners for several days, surrounded with compassionate care and support. 

About six weeks later, Ben returned for a second procedure to remove the cast rods and staples.  The visit marked the beginning of an exciting new chapter being fitted for his first prosthetic leg. 

On April 14, 2025, something incredible happened when Ben stood on two feet for the first time in his life.  It was one of the most emotional and joyful moments we had ever experienced.  With continued therapy, and hard work at home, Ben reached another milestone and took his first independent steps on July 16, 2025!

Today Ben is full of life, running, playing outside, and can even pedal a bicycle!  Watching him is something we once feared would never happen.  His journey with Shriners will continue with follow-ups and new prosthetics as he grows!

We can never fully express our gratitude to all Shriners everywhere for supporting the care programs at Shriners Children’s! We are beyond blessed and forever thankful for what Shriners has done for our son and family!”