In March of 2024, Beckett was diagnosed by Boston Children's with Congenital Fibular Deficiency, or more commonly referred to as Fibular Hemimelia (FH). Fibular Hemimelia is a congenital (at birth) limb deficiency where there is a shortening or absence of the fibula bone in one or both legs. The actual cause of FH is unknown to doctors and scientists at this time, but there is a spontaneous genetic mutation that occurs during the development of the lower limb bud, resulting in this diagnosis. Even though most of the affected limb is found in the lower leg and foot, the entire leg from the hip down to the toes is impacted by this condition. ​ For many individuals, including Beckett, this means not only does he have FH, but also a significant limb length difference diagnosis, too.

Beckett was born with only four rays and four toes on his right foot which is what prompted our connection and visit to Children's right after his birth.   Beckett's right fibula bone is present, but is shorter than his left one, which when fully grown, will result in a limb length difference of approximately 2.5 inches. Beckett's right leg will continue to grow 12% slower than his left leg.  This difference will be accommodated with lifts and orthotics up until an intensive surgery takes place in his middle school years to lengthen the shorter leg. 

Fibular Hemimelia is a rare disorder.  It occurs in 1 in every 40,000
births.  On average there are about 100 live births a year with FH in
the United States. Even though rare, there are many influential individuals who have adapted to having either FH or limb length differences. Both Paralympian gold medal swimmer Jessica Long and Alex Barone-an actor for Netflix and Hulu have FH. Jared Sullinger, a former Boston Celtics player and David Beckham, a famous soccer player have limb length differences.

The month of April is National Limb Difference and Loss Awareness Month. Orange is the color used to represent this awareness, while teal is the color used to represent FH.  Since FH is considered a rare disorder, Beck proudly loves and holds his stuffed zebra- the pattern used to represent those with rare disorders.

We are building Team BRAVE LIKE BECK right from the start of our journey as a way to educate, advocate, and empower Beck and other children who have FH to show them just how unstoppable they are in this world.  On SUNDAY June 9th, we will begin our annual tradition of participating in the Eversource Walk for Boston Children's Hospital.  We would love to have you join us that day! Please see below for more information regarding what donations will provide to BCH.

Thank you for being a part of Beckett's village and bringing awareness to Fibular Hemimelia and limb length differences.

With love,
The Gaynor Family

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