Leila's Story

Images Captured By End of the Road Photography

Tiny Light Leila loves to swim and be read to. She especially enjoys cuddle time with mom and dad and watching older sister Izzy put on plays.

Leila was born still after a blood clot was detected in the umbilical cord. The hospital team worked to revive her and was successful after twenty-seven minutes. In the days following her birth, her medical team had no definitive answers on what her future would hold. Eventually, her heart muscle repaired itself, along with all of her once failed organs, but over time, Leila began to suffer from small seizures and was not meeting milestones. Leila was subsequently diagnosed with cerebral palsy and epilepsy due to oxygen deprivation caused by the clot.

Leila’s parents credit her determination and strength as the most inspiring aspect of their journey, and note that her perseverance was present from day one. They state that “being a parent with a special needs child is … a gift,” and that the amount of support provided by the community has been amazing.

As a message to other families dealing with similar circumstances, Leila’s parents note that, “looking in the future is hard when we have no idea what it holds for our children – believe in your son/daughter and never give up hope that they will achieve what they are able.”

Story by Stephanie Bond

Alejandra's Story

Images Captured by Stephanie Brown Design

Tiny Light Alejandra is just three years old. When her mom, Antonella, was seven months pregnant, she was told that her unborn little girl would be born with spina bifida and hydrocephalus. She prayed that all the doctors would be wrong. But, as well as the diagnosis of spina bifida and hydrocephalus, Alejandra also had dislocated hips and a clubbed left foot.

Mom is challenged every day by her Tiny Light’s health issues but she loves to watch Alejandra reach her milestones. Alejandra loves having someone read to her and loves watching Toopy and Binoo. Like any three-year-old, she loves to play and dance. Even when Alejandra is feeling a little down, she manages to share a smile with those around her.

As a single parent, mom Antonella says it’s hard doing it alone, but her daughter gives her strength and reminds her of the woman she used to be. She says, “They can grow up to be everything you ever dreamed possible for them.” Taking it day by day and sharing cuddles with her little girl will help Antonella stay focused on their goals and get her through the challenges they face. And she’ll always be surrounded by family and friends who love her.

Written by Valerie Bush

Mariah's Story

Memories Captured by Squishy Prints

Mariah's little life changed drastically when, at only seven weeks old, she went into cardiac
arrest. She was then diagnosed with severe brain damage, which resulted in Quadriplegic
Cerebral Palsy and Epilepsy. Mariah was also born with a rare hormone disorder called
Panhypopituitarism; her body does not produce the necessary hormones to sustain life.

Mariah, now 10, loves all kinds of music and goes to music therapy, which she enjoys
tremendously. She also has hydrotherapy, and loves being in the pool. Mariah has a small
laugh, which is not heard often, but her mother states that it is the most amazing sound. Mariah
somehow manages to find strength to fight through and overcome all odds set against her.

Learning how to adjust to daily activities and making necessary adaptions to ensure Mariah is
included fully is the biggest challenge for her family. They revealed that it does not matter what
Mariah cannot do, only what she can! Mom refuses to take anything for granted and, instead,
embraces everything ‘Mariah.’

"Everything in life matters."

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
it.

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

Colson's Story

Images Captured by Absolute Photography

Meet Tiny Light Colson. He loves music, dancing, playing superheroes and making funny faces. Basically, he loves anything that gets him attention. His mom says there isn’t much this little real-life superhero doesn’t like. Colson has been thrown challenges since the day he was born but he doesn’t give up easily.

Colson came into the world weighing four pounds, and although he was tiny, he was in his mom’s hospital room the very next day. His parents and doctors took that as a good sign that he was ready to take on the world. At first, his parents found it scary to handle such a small baby, but before long, after some guidance from the nurses, they were on their way home. He was still very small but his parents were optimistic he’d catch up in growth and be like most other babies. However, despite their optimism, Colson didn’t catch up. At his next follow-up appointment, Colson’s mom knew something wasn’t right and asked for a referral to a pediatrician. Sure enough, the pediatrician felt the same and the testing began. Colson and his parents all got blood work done and 10 weeks later Colson was diagnosed with Russell-Silver syndrome.

Russell-Silver syndrome, or RSS, is a growth disorder characterized by slow growth before and after birth. Babies with this condition have a low birth weight and often fail to grow and gain weight at the expected rate. This condition is estimated to affect one in 75,000 – 100,000 people. Researching the disorder, his parents could find little to no information, but luckily they did find the Magic Foundation, which has been an incredible support system for them.

Despite the difficult challenges Colson has faced in his short life, he’s done remarkably well. He never needed a feeding tube and met most of his milestones by just a week or two. Colson has also started growth hormone therapy. His parents hope he can catch up on growth, not just in height but to strengthen his heart and organs and build some muscle because he’s still so petite. The title “Tiny Light” seems like it was made for Colson. His parents say, “The most amazing and wondrous thing about this journey is that even though he is missing a chromosome and some growth genes, he is perfect in his own tiny way.”

Written by Adrianna Tailleur

Alexandre's Story

Images Captured By MJG Photography

Meet Tiny Light Alexandre. A few months after he was born, Alex's parents noticed that he was struggling with certain tasks, such as turning over or reaching for things. Their fears took them to the Ottawa Children’s Treatment Centre, where, after many tests, it was discovered that Alex experienced Global Development Delay, had a seizure disorder and microcephaly. Added to his diagnosis later was asthma and allergies to milk, eggs and nuts. His parents were heartbroken and wondered what they had done wrong. Why did their child have to suffer?

Fast forward a few years. Alex is nearly eight years old and loves listening to music, swimming, climbing the stairs, “jogging” with his Dad and riding the bus to school. His mom revealed that it’s important that Alex remain happy and active and that he continue to develop and progress in all aspects of his life. She feels the best advice she can share with other parents is to be patient; your child will constantly amaze you.

Written By Kristi Hall Busque

Ethan's Story

Images Captured by Anastasia Photography

Thirteen-year-old Ethan is a positive and fun-loving person who’s also kind and compassionate. Every day this very social and determined young man amazes his parents and his sister Heidi with his outstanding attitude.

Since being born with spina bifida, Ethan has endured some major challenges, including many surgeries. Because of the nerve damage to his lower body, he’s needed to use orthotics, crutches and, most recently, a wheelchair. But Ethan doesn't let that hold him back! After being home-schooled for years, he’s now joined his peers in high school.

Ethan loves skiing, riding, reading, sword fighting and World War II history. He's also a gifted learner, excelling in both reading and verbal comprehension. He has an amazing ability to relate to both his peers and adults.

For Ethan's parents, Doug and Christie, it’s been difficult watching Ethan deal with surgeries and hospital stays, but they continue to be inspired by his resilience. They hope Ethan will attend post-secondary school and continue to enjoy a happy and fulfilling life.

Story Written by Catherine Urquhart

Chloe's Story

Images captured by LLB Creative

Tiny Light Chloe is a four-year-old little girl who loves to laugh and have tea parties, and who dreams of being a princess. She loves to draw, sing and dance. She has an amazing memory. Looking at Chloe today, you might never know the struggles she encountered when she was born. Within minutes of her birth, the Doctors knew something was wrong, and she was taken to Sick Kids Hospital to undergo emergency life-saving surgery. It was discovered that several of Chloe's organs were fused together, and six days later she was diagnosed with a rare condition called cloacal malformation.

Cloacal Malformation is a condition which affects only girls and involves several organs (bladder, uterus and rectum) being fused together at birth. This condition has required Chloe to grow up very quickly. She has had to learn to understand complex medical terminology and to have a strong awareness of how her body works. Chloe has endured seven invasive surgical procedures, countless hospitalizations, and undergoes eleven medical interventions on a daily basis.

Chloe has incredible strength. She has bounced back from her surgeries, and is now healthy and happy. Chloe's family has worked very hard to ensure that Chloe's daily life is as normal as possible. She attends school alongside her peers, thanks to teachers and staff who are willing to go the extra mile and learn to attend to Chloe's specialized care. 

Even with all the pressure that has been placed on her, Chloe still manages to live life in the moment. She delights in looking at the clouds in the sky, and gets excited when she sees a beautiful flower. She shows everyone around her how to appreciate all the little things in life. Her parents tell us that "Chloe's spirit and appreciation for life is so wonderful to see – she is our little hero."

Written by Angela Reimche

Campbell's Story

Memories Captured by Amy Symes Photography

Meet Tiny Light Campbell. He’s four years old and started school this year. Campbell uses a wheelchair and works very hard to walk in his Rifton and Kaye walkers. Campbell enjoys being with others and absolutely loves music and dancing, especially with Ellen at the beginning of her talk show.

Campbell was born prematurely and was delivered at only 24 weeks. He fought constantly to stay alive, and there were many occasions when his parents, Joanna and Bertran, were not certain if Campbell would live. After the fourth month in hospital, and five surgeries to try to save his eyes, his parents were told that Campbell would be blind. One month later, they were told that he’d also be deaf. Campbell has now been home with his family for three years, but the journey is only beginning. One year ago, it was confirmed that Campbell has cerebral palsy and may never walk. 

“We expose him to many things,” says Joanna, “bike rides, cross-country skiing, camping, swimming, yet we know that with his challenges he’ll be limited. He’s a remarkable boy with so much love and potential. He lifts our spirits and shows us the way all the time, but I still feel, at times, that he’ll be left out of many opportunities, and that truly breaks my heart.” She adds, “We are proud of him and who he is. He’s taught us so much in his four years of life. He’s a very funny little boy and has a smile that will warm any heart, and melts mine.” 

Written by Lori McLellan

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