Support Brave like Beck

Welcome to Brave Like Beck! We’re thrilled to be participating in the 2025 Eversource Walk for Kids! This marks our second year, and we’re excited to have you join Beckett’s village. Thank you for being part of this incredible journey with us!

When Beckett was just three months old, he was diagnosed with Fibular Hemimelia at Boston Children’s Hospital. Fibular Hemimelia (FH), or congenital fibular deficiency, is a condition in which the fibula bone (the smaller of the two lower leg bones) is either partially or completely absent in one or both legs. While the exact cause of this rare condition is unknown, it’s believed to stem from a spontaneous genetic error during limb development in the womb. Those with Fibular Hemimelia often experience limb length discrepancies, missing toes, and knee instability.

So, where do the orange, teal, and zebra print come into play? Fibular Hemimelia is a rare condition, affecting around 1 in 40,000 to 50,000 live births. Zebras are often used as a symbol for rare conditions, representing the uniqueness of each experience and the need for greater awareness. Orange is associated with limb length discrepancy, while teal is the color for Fibular Hemimelia.

Because Fibular Hemimelia is a spectrum condition, its symptoms and severity can vary greatly from person to person, making treatment plans highly individualized. By the time Beckett reaches full growth, he will have a leg length difference of more than 1.5 inches. For context, most people can detect a discrepancy as small as 2 centimeters. Boston Children’s will continue to be by our side as we navigate Beckett’s journey. Treatment for FH may involve a variety of surgeries, including stunting the growth of the longer leg or using external fixators to lengthen the bones and muscles in the shorter leg. Beckett’s first leg-lengthening surgery is planned for when he reaches middle school.

We’ve already begun supporting Beckett as he learns to explore his world! With the guidance of his pediatrician, who has helped him hit key milestones, we were referred to Northeast Rehabilitation Hospital. Since July, Beckett has been attending weekly physical therapy sessions, where he works hard to strengthen his leg muscles and navigate new environments through gross motor activities. As of April 2025, Beckett isn’t yet walking independently but is beginning to pull himself up to stand and take steps along furniture. He gets around just fine using what many call the "FH scoot."

During our last visit with Dr. May, Beckett’s lead pediatric orthopedic surgeon, in February, scans showed that Beckett had reached the 2-centimeter mark. To stay proactive, Dr. May helped Beckett get fitted for his first orthotic. We teamed up with Boston Orthotics and Prosthetics to create his first SMO (Supramalleolar Orthosis), a custom-made brace designed to support and stabilize the foot and ankle. Beckett has now been wearing his SMO for nearly a month, and it’s given him a huge boost in confidence and strength, helping him explore his world with greater independence.

We’ve received incredible support from Boston Children’s since Beckett’s diagnosis, and we’re committed to supporting the hospital and its outstanding team of doctors and nurses. Our journey with them is just beginning. We’re excited to return for our second year as a team (hopefully with better weather this time!) to raise money and awareness for both Boston Children’s Hospital and Fibular Hemimelia.

Beckett’s journey is just beginning, and he’s already showing remarkable resilience and determination. Our goal is to educate and raise awareness, something we were so proud to do last year when we shared Beckett’s story. We’d love for you to join us for a beautiful walk around the Charles River in June. Beckett’s village has room for everyone, and we hope to see you there!