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A drummer who beats out rhythms across the house. A master LEGO builder with entrepreneurial dreams. And a devoted New York Mets (and Knicks) fan.
Colin McKenna lives much like any other boy his age — playing, exploring and dreaming. Still, very few boys face the challenges he does.
In six days, the 10-year-old Huntington boy will undergo his 16th surgery for a rare facial condition that has shaped much of his young life.
Born with hemifacial hypertrophy, a rare vascular birthmark and congenital anomaly, Colin’s condition causes the right side of his face to grow at a much faster rate than the left, affecting his facial structure, bone mass, nerves, blood vessels, and vision.
His mother, Jessica Golding Roberts, explains in the family’s fundraising campaign that her son’s progressive condition has required constant medical attention since he was an infant.
Colin has undergone 15 surgeries since he was 21 months old. His medical team at the Vascular Birthmark Institute in New York City has treated him since he was six months old.
Third surgery in 11 months
His June 16 surgery will be his third procedure in the less than a year.
“These interventions are not optional — they are essential to maintain his health, comfort, and future facial function,” Golding Roberts said, on the GoFundMe page she established over the weekend. “Your support doesn’t just fund procedures — it helps a kind, spiritual, creative boy continue to live joyfully and confidently as he grows into his future.”
The family is raising funds to help cover surgical and hospital expenses, which range from $5,000 to $30,000 per procedure, along with ongoing orthodontics, laser treatments, ultrasounds and, eventually, maxillofacial reconstruction.
As of Tuesday afternoon, the campaign has raised $18,000 from 156 contributions.
Can’t keep Colin down
Despite the many medical challenges, Colin remains joyful and active, his mother said.
Golding Roberts describes her child as “a drummer who beats on every surface in our home, a master LEGO builder, a Boy Scout, a tennis player, a Mets fan, and a budding entrepreneur who dreams of inventing compassionate products for kids like him.”
Colin is inspired by Foo Fighters drummers Dave Grohl (he’s also a guitarist) and the late Taylor Hawkins, enjoys gaming content from creators like MrBeast and Preston, and is a fan of classic films, once dressing as Steven Spielberg for school, his mother wrote.
Perhaps most notably, Colin is channeling his experience into a hopeful future.
“He dreams of designing compassionate, comforting tools for kids who undergo consistent and ongoing medical care — inventions that help other children like him feel safer and more supported,” his mother shared.
Building community
The family hopes that sharing Colin’s story will increase awareness and build community for others facing similar rare conditions.
“This part of the medical world is real, but often under-recognized. We know families like ours are out there — doing their best with rare diagnoses and limited awareness,” Golding Roberts said. “As his mom, I’m passionate about getting this story out — not just for Colin, but for every child living with medical differences that deserve understanding, access, and support.”
Buoyed by support
“Colin is who he is because of the village that surrounds him — our family, friends, doctors, and now, you,” Golding Roberts wrote.
Top photo: Colin McKenna will undergo his 16th surgery for hemifacial hypertrophy, a rare vascular birthmark and congenital anomaly, his mother said (GoFundMe).
