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

Lilly's Story

Meet Tiny Light Lilly. She loves jigsaw puzzles, colouring, reading, playing with sand and just relaxing while watching Treehouse TV. She always has such a positive attitude and is always in a good mood. Her parents say her smile and hugs are the best in the world. It’s hard to believe this happy little girl has been overcoming challenges since the day she was born.

Lilly was born at 30 weeks gestational age, and two months later her parents were told she had cysts in her brain due to a brain bleed. These cysts were removed quickly but Lilly’s parents were warned that the cysts may have caused damage and that their sweet baby girl could have Cerebral Palsy. When Lilly was 10 months old her parents noticed she wasn’t hitting physical milestones like other children her age. At her one-year check-up they were given the diagnosis they’d feared. Cerebral Palsy. They were devastated at first. They’d known it was a possibility, but were hoping for the best since Lilly was doing so well in all other aspects.

It’s been a long bumpy road but Lilly’s made incredible progress; she’s able to walk independently with the help of her AFOs (her super shoes). As well, Lilly requires glasses and must have Botox injections every four months, which her parents say is the hardest thing for them in all of this because they hate seeing Lilly in pain. The devastation they’d once felt upon hearing the diagnosis has all but faded now. Lilly’s parents feel blessed to have her in their lives, saying, “Since Lilly was born, our outlook on life has changed completely. What seemed important before has now little to no meaning at all. She gives us strength to fight even when we have no strength left. She makes us see the world through her eyes and life is so much better that way.”


Story written by: Adrianna Tailleur