Lukas' Story

Images Captured by Stephanie Brown Design

Tiny Light Lukas goes by the name “Lucky.” He’s been obsessed with letters since
he was a baby and loves to play video games on his Xbox, especially sports
games like NASCAR, baseball, soccer and golf. He also loves playing road
hockey and soccer outside with his brother Cameron.

Lucky’s family is inspired and amazed by how much he learns; he surprises them
with new things all the time. They especially love seeing him interact with animals
because they “always get the biggest reaction from him.”

Born eight weeks early with markers indicating he could have a genetic disorder,
Lucky was diagnosed with Kabuki syndrome at the age of two. Lucky’s parents,
Donna and Clint Cuyler, admit the news was “very scary and devastating” but
they came to accept his diagnosis, deciding that they would let nothing stand in
his way as he reached his full potential.

Kabuki syndrome is very rare and affects every child differently, bringing with it
the unknown. Lucky is affected by global developmental delay, low muscle tone,
and a syrinx (or cyst) in his spinal cord, which affects the nerves feeding the lower
half of his body, including his bowels and bladder. He’s also sensitive to music,
textures and temperature. Having a child with special needs has challenged
Donna and Clint to adjust to a new reality and learn to deal with what comes day
by day, challenge by challenge. They can see how perfect Lucky is because he
opens the world to joys and opportunities they would never have imagined. Their
greatest hope for Lucky is that he’s never bound by his disability.

The Cuyler’s journey with Lucky has shown them how much support there is in
the community for special children. Their best advice to parents? “Never put
limits on what you think your child can do … let them soar.”

Story written by Adrianna Tailleur