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

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

Sevanna's Story

Memories Captured by Eye 58 Photography

Meet Tiny Light Sevanna. This sweet, caring six year old is adored by everyone who knows her. She loves to dance and sing and is a whiz at remembering song lyrics. She also enjoys going to school, swimming, colouring and playing outside with her siblings and neighbourhood friends. Despite the fact that she has been through so much already, spending nearly half of her life in the hospital, she continues to demonstrate her incredible fighting spirit and love for life. 

During a routine ultrasound, Sevanna's mother, Ricki, was told that she would be having a baby girl, but that something was wrong with her heart. When Sevanna was born, she was diagnosed with multiple heart defects: only one ventricle with a severe VSD (ventricular septal defect), pulmonary atresia, an ASD (atrial septal defect), a PDA (patent ductus arteriosus), L-TGA (left-side transposition of the great arteries) and a missing mitral valve. Sevanna’s lungs are also reversed (situs ambiguus) and she was born with no connection from her aortic arch to her lungs. What is unique about Sevanna's case is the positioning of her heart. It sits to the right at a severely tipped angle and is also upside down and backwards. 

She’s the only child in North America diagnosed with both hypoplastic left and right heart syndrome because the walls in her heart chambers have the characteristics of both sides (smooth and ripply walls). Her official diagnosis is “dual indeterminate hypoplastic left and right heart syndrome.” Unfortunately, there were also many complications during her heart surgeries, resulting in vision loss (she is blind in her left eye), kidney damage and moderate brain injury. She’s been diagnosed with epilepsy and ADHD as well.

Sevanna's health has been stable for over a year now, though she continues to be seen by many doctors and specialists. Within the next couple of years, she’ll require a valve replacement and, in her teens or early 20s, she’ll receive a heart transplant. For now, Sevanna will continue pursuing her dream of becoming a singer and dancer, singing with her mom daily and taking ballet lessons. 

Story written by Emily Harrison

Lukas' Story

Images Captured by Liz Bradley of elizabeth&jane photography 

Meet Tiny Light Lukas. This Tiny Light loves playing with his cars, watching the movie Cars and playing with his puppy. He really enjoys dancing and singing along with his favorite TV shows and country music.

Lukas was born with Tetralogy of Fallot, a congenital heart defect. He was diagnosed at just one week old. When Lukas was born he had a heart murmur that was loud enough for the doctors and nurses to hear with just a stethoscope. Lukas had a very large hole in the walls between the right and left ventricles of his heart. Fortunately, Lukas has only needed one surgery to date, when he was six months old. Lukas’ recovery was remarkable and just six days after the surgery he was able to go home with no medication except Advil for pain, which he didn’t even really need!

“We were terrified,” Lukas’ mom says. “Without surgery, Tetralogy can be fatal. Even with surgery there were no guarantees.” Lukas didn’t walk until he was 23 months old and has had some other developmental delays. Even though Lukas cannot carry on a conversation like an average child his age, he can answer questions and has learned so much. He can identify all his shapes, colours, numbers and letters, and is even spelling some words now. 

His parents’ biggest fear is that Lukas will need to undergo more surgeries and possibly be diagnosed with Autism Spectrum Disorder, which his older brother has been diagnosed with. However, his family hopes that “Lukas will get to live his dreams and make them a reality. Now that his heart is fixed he could do anything that a normal kid could do.” 

Story Written by Kelsey Walker

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

Nathan's Story

Images Captured by CM Photo Art

Tiny Light Nathan brings sunshine and smiles to everyone who comes close.  He has a fighting spirit, and has so far defied all the predictions of his doctors.  Nathan’s adorable chubby cheeks, wide, cheering smile, and his happy coos soften the heart of everyone who meets him.

Nathan has interhemispheric arachnoidal cyst, agenesis of the corpus collasum, missing splenium, nystagmus, sun setting eyes, and low oxygen saturation.  He faces a battle every day to stay alert, feed well, and to stimulate his brain to the fullest so that he can grow and reach milestones.  His challenge is to keep feeding well, get enough oxygen, and to live each day to the fullest because he is quite the sleepy little boy.  

By four weeks old, Nathan had already undergone two difficult surgeries.  He came through like a champion, and continues to do better than expected.  He is being followed by a number of clinics, and has captivated many with his adorable and radiant personality.  His parents, Mark and Ronda, are amazed at the strength and spirit that Nathan has shown the world.  The family takes huge comfort from the support of their friends, family, and church congregation, who have been very supportive of their journey with Nathan.

He and his older brother are both a joy to Mark and Ronda, who cherish every day with their boys.  Nathan may have called NICU home for a while and has spent time in hospitals, but he is in his real home now.  His family is so thrilled to have their tiny light with them every day.  There is no sure prognosis for Nathan.  His mom says, "There are numerous concerns such as epilepsy, mild to severe mental challenges, developmental challenges, vision issues and feeding problems," but his parents are hopeful that Nathan will live a full and very happy life.

Story written by Andrea Lee

Madi's Story

Memories Capture by Photography by Eiko
 

Madi is a very strong little girl who can put a smile on anybody’s face. Madi loves watching Baby Einstein, listening to music, swinging on her swing set, playing with musical toys, relaxing in her crib and going to school. Madi loves school!

Madi was born healthy and it wasn’t until she was 7 months old her family noticed changes. Madi was unable to sit up on her own unassisted without falling over. After visiting a paediatrician, it was clear something wasn’t right so a number of tests were conducted. A muscle biopsy, MRI of the brain, genetic testing and several other tests came back with no answer. However, Madi’s paediatrician noticed traits that lead him to test for Rett syndrome, a genetic mutation that causes neurological impairment. On May 22 2012, Madi’s test results for Rett syndrome came back positive.

Madi has been affected by Rett syndrome in every part of her body; she cannot walk, crawl or stand on her own. She also cannot say any words. Her family is very unsure what the future holds for this beautiful little Tiny Light. Mom Kalle, Stepdad Ryan and baby sister Camryn just hope Madi can make the most of her life and be happy.

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