Levi's Story

At only an hour old, nurses noticed that Tiny Light Levi wasn’t breathing properly.
Doctors diagnosed him with Hypoplastic Left Heart Syndrome. Levi’s heart failed to
grow a left ventricle, and, therefore, his heart wasn’t pumping enough blood through

Images Captured By D4 Photography

This Tiny Light had his first surgery at only three weeks old. The surgeries kept
coming. At four months old, Levi’s liver failed and he underwent another surgery.
At 18 months old, he had open-heart surgery, and at 3 years old, yet another to save
his life. Due to complications from his previous surgeries, scar tissue had become
tangled up in his small intestine, which, had in turn, caused it to die.

Levi’s mother, Christine, says, ‘You just want to suffer instead of him.’ Watching her
little boy suffer is heartbreaking, but the community support they have received
has been overwhelming. Tiny Light Levi is a brave eight-year-old boy. He loves
math and soccer, and loves camping with his family. He has the best smile, and has
learned to be very empathetic towards others. He once gave a nurse a kiss because
she felt bad she had to give him needles!

Christine is reminded everyday how precious life is through her son, Levi. Levi will
always be weak, and he will likely have other surgeries ahead of him. His heart
works very hard every day to compensate for the loss of the left ventricle. Tiny
Light Levi’s dream is to be a baker and have his own bakery some day. His parents
know he will be happy with whatever he does.

Written by Valerie Bush

Nevaeh's Story

Images Captured by D4 Photography

Tiny Light Nevaeh is always ready with a smile, a hug and a big beautiful
laugh. This spunky four year old girl has shown everyone that life is full of
love…all we need to do is get out there and live.

Nevaeh was diagnosed with Down syndrome at birth. Doctors were also
concerned about heart defects – atrial and ventricular septal defects – as
well as fluid in the lungs.  Though parents Melissa and Corey were
hopeful the heart would heal on their own, Nevaeh had to undergo
surgery at six months. Then at one year, this tough little girl had another
operation to correct craniosynostosis – a birth defect that causes the
sutures on a baby’s head to close too early.

Though the road hasn’t always been easy, especially dealing with
misconceptions about children with Down syndrome, Nevaeh is happy
and healthy. She loves to read books and mother her baby dolls. She is
especially good at drawing rainbows and enjoys breaking out the dance
moves with her younger sister. Communication is a challenge, but
Nevaeh knows over 200 signs.

This Tiny Light has a wonderful future in front of her and no matter
what path she chooses, her family will stand proudly at her side.
“Nevaeh is amazing. She has shown me that so many of us complain
and take things for granted. Enjoy the little things because we all know
it is the little things that make life worth living.”

Story Written by Elaine Yong

Kaylee's Story

Images Captured by D4 Photography

Kaylee was born December 4, 2010 and was instantly loved by so many. She arrived weighing 7 lbs 9 ozs, with beautiful blue eyes and appearing happy and healthy.

At five months, Kaylee started having seizures and no longer drank her milk. Following a series of medical tests, her parents received devastating news. Kaylee had Leigh's disease, a rare neurometabolic disorder that affects the central nervous system, causing loss of motor skills and eventually death. Kaylee's doctors didn't think she would survive much longer than a year. Happily, she proved them wrong. Despite many days in hospital, this tiny light had much to live for, such as visits with her Great
Nana and Great Grampie and Grandma and Grandpa Detka. Thankfully, her loved ones surrounded her with much love and happiness. With her mom she'd bake cakes, sing and dance in her wheelchair or read and watch videos. And at the end of the day, it was daddy time!

Kaylee loved her first trip to the swimming pool. Sadly, it was also her last. Kaylee passed away at just two and a half years old. But she left her loved ones with many beautiful memories. Just days before she died, she laughed really hard and for the first time said "Mommy," treasured gifts for her family, who will miss her always.

Story Written by Catherine Urquhart