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

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

Kael's Story

Images Captured by Cormack Photography 

Meet Tiny Light Kael.

This little Tiny Light loves riding on his 24V John Deere tractor with trailer and riding in his Dad’s truck towing the cargo trailer or “fifth wheel.” Kael loves spending time with his grandparents and really likes being in the water—from playing in the bathtub to swimming in the lake. Also, his family says he gives the best snuggles.

Kael was born on time with no complications. Everything seemed normal until he was about six months old and his weight and head circumference started to fall off the charts. Testing from the age of six months to six years turned up nothing. Kael’s family had no answers as to what was causing his condition. It was after his third MRI that his parents, Kristine and Cam, received a phone call from the neurologist informing them that Kael’s white brain matter had gotten brighter, which indicated the possibility of a brain disease.

After further testing, Kael was diagnosed with type 1 Cockayne syndrome, a genetic disorder characterized by poor growth, premature aging, sensitivity to sunlight, moderate to severe developmental and neurological delays and a shortened lifespan. We’re not sure what the future holds for this little Tiny Light. All his family hopes is that Kael can enjoy the people and places he will encounter in life and to “just be a happy boy.”

Written by Kelsey Walker
Edited by Karin Keefe

Conrad's Story

    Meet Tiny Light Conrad, a very friendly boy who loves making new friends. He likes playing with cars and trucks, and watching Sesame Street and Cars videos on his ipod. He really enjoys riding his quad outside and especially loves fishing and helping his grandpas drive their boats—all the things that a typical three-year-old boy would enjoy. But there is something that sets Conrad apart from most three-year-olds and it has caused his family’s whole world to tremble.
    

     On May 27, 2011 Conrad was diagnosed with acute lymphoblastic leukemia. On top of his threeand-a-half-year treatment cycle, Conrad also deals with fevers every three months no matter what is happening. His parents say the hardest part is watching their son go through all this and not really understanding why or what he’s going through. When he does get a fever, Conrad doesn’t understand why he is in the hospital for days, sometimes even weeks. That, too, is hard on his parents.
    

    Despite the daily struggle this little warrior faces, he tackles it head on with amazing courage for a child his age. He takes it all like a true champion and pushes through every challenge thrown at him, not letting anything slow him down. The possibility of relapse scares his parents the most, but they remain positive, focusing on the “now” and not the “what if’s.” Advice they have for other parents in similar situations is to “stay strong, stay positive, ask lots of questions and be your child’s advocate.”

Images Captured by Simply B Photos
Story written by Adrianna Tailleur

Logan's Story

Images Captured by Samantha Jiwa Photography

This Tiny Light has tremendous toughness underneath his cute exterior.  By the time Logan was three and a half months old, he had already been through more health challenges than some people face in a lifetime.

The ordeal began just two months after his birth, when Logan spiked a fever.  His mother Katelyn took him to the local emergency department and as the hours went by, little Logan developed a rash and grew very pale.  He was diagnosed with meningitis and transferred to the nearest children’s hospital.  After an MRI was performed, a team of neurosurgeons went to meet with the family.

The MRI had revealed that a dimple at the base of Logan’s lower back actually had a little hole in it leading directly to his spinal cord.  E. coli bacteria from his feces had been getting into the hole, causing the meningitis.  Surgery was the answer to the problem, but Logan’s unusual story wasn’t over yet.  As the surgeons followed the hole through to Logan’s spinal cord, they discovered and removed a tumour, and an abscess which had been draining into his spinal fluid.  Also, there were other abnormalities which made the operation especially challenging.  

Logan spent a total of five weeks in the hospital, but as Katelyn says, “The most amazing thing was watching him go through such a hard thing and be so cooperative with the staff with blood work and bandage changes and anything else they needed to do.”  Months later, this Tiny Light is doing well with no apparent regrowth of the tumour.  He is being monitored for any long-term effects from the meningitis and the spinal cord abnormalities.  

Written by Jayne Akizuki

Owen's Story

Images Captured By Jamie Allport Photography

Tiny Light Owen is a happy little guy who loves making his mommy and daddy smile. He enjoys holding toys, saying the few words he has learned, and holding up his good leg so his parents can “eat it”. He has surprised everyone with his strength and determination and continually proves doctors wrong by learning to do what they say he will never be capable of.

Owen was born in March of 2011 in severe respiratory distress. He spent the majority of his first year in the hospital and was finally diagnosed in March 2012 with CHARGE Syndrome, a rare genetic disorder. CHARGE Syndrome consists of a wide variety of birth defects that vary depending on the individual. “C” stands for coloboma of the eye (a hole in one of the eye structures), “H” for heart defects, “A” for atresia of the nasal choanae (a blockage in the back of the nasal passage, caused by abnormal bony or soft tissue), “R” for retardation of growth and/or development, “G” for genital and/or urinary abnormalities, and “E” for ear abnormalities and deafness. Owen has overlapping skull plates, lower set ears, choanal atresia, narrowed eardrums, an atrial septal heart defect, laryngomalacia (weak cartilage), a small trachea, larynx, and windpipe, as well as hydronephrosis of his kidney (water in the kidney), umbilical and inguinal hernias, and hip dysplasia.

With the exception of the odd surgery or feeding tube complication, Owen is doing well. Most children with CHARGE Syndrome don’t survive their first year, but Owen is two years old and continues to grow stronger. He has recently learned to sit on his own for up to 40 seconds! While the future is uncertain and more challenges are likely to arise, Owen’s parents remain hopeful. Problems can arise at any time and even the common cold can cause major complications. While there have been many moments that have been difficult and scary, they are thankful for every day they have with their son. As his mom says, “He is perfect in every way and I know I wouldn’t trade a second of this journey for any other.”

Story by Emily Harrison

Jayme's Story

Images Captured By Jodie Hadden Photography

22 month old Jayme is a happy little girl who loves swimming, hugging,
people watching and laughing. And this Tiny Light is known for her
infectious giggle!

Jayme arrived in August 2011 after a healthy, full-term pregnancy but
soon after was diagnosed with Down syndrome. It was a shock to her
parents, who were also faced with the news that Jayme had a heart
defect. At just two months old she underwent open heart surgery.

Understandably, for parents Christie and Scott there have been some
tough days. They've worried about Jayme's quality of life and her
future. But the past few years have also shown them they are supported
by an amazing family and friends.

Despite any challenges, Jayme has given her family unconditional love.
And in turn they have come to realize that she can live a long,
healthy and happy life. One that will be even happier this summer,
when Jayme will become a big sister.

Written by Catherine Urquhart

Skyeler's Story

Images Captured by Proudest Monkey Photography

Meet Tiny Light Skyeler. This Tiny Light enjoys running, cuddles and playing hockey and trains. He especially loves hanging out with brothers Hayden, Colyn, Brogan and Parker.

Skyeler was diagnosed with Noonan syndrome in September 2012 – a congenital disorder often referred to as a ‘hidden condition’ as it displays no obvious signs, but consists of problems that may be varied and complex. Skyeler’s parents note that not all of his issues are covered by the Noonan syndrome diagnosis. In addition, Skyeler suffers from chronic constipation, oral aversion, developmental delay, subglottic stenosis, seizures, sleep apnea and vocal cord paralysis.

Skyeler’s parents state that the hardest part of the journey has been seeing their little boy so sick and completely helpless. They are inspired by how he has persevered and how he continues to remain strong and keep smiling.  “He has overcome so much, he gives us the strength to overcome our fears.”    

As a message to other families who have children with similar diagnoses, Skyeler’s parents say, “Don’t go a single day without embracing them in a hug, giving them a kiss and telling them that you love them. Make them know they are the absolute most important thing in life.”

Story by Stephanie Bond

Chloe's Story

Images Captured by Rebecca Hall Photography

Tiny light Chloe went to the doctor when she was 2 years old for what her
parents thought was a simple lazy eye. To their dismay she was immediately
transferred to Sick Kids Hospital. It turned out she had cancer in both
eyes. Within a few days, she had her left eye removed, but luckily the
doctors were able to save her right eye.  Though she had to undergo chemo
and other treatments, most of the time no one would have known she was sick
because she always stayed strong and had a smile on her face.

Like most little girls, Chloe enjoys singing, dancing and swimming. Though
she still needs frequent monitoring, she has now been cancer free for three
years. After the Children’s Wish Foundation granted Chloe’s wish to go to
Disneyland, she and her have family participated in the Wishmaker walk
every year to help raise money to fund other children’s wishes.

Nothing holds this Tiny Light back. Despite having only one eye, she does
all the activities any five year old would, including jumping on the
trampoline and even gymnastics. She has adjusted well to having one eye,
and even cleans her prosthetic eye by herself. Chloe’s mother says her
daughter is her hero, and a true inspiration to everyone.

Story written by Ardis Fisch

Joseph's Story

Images Captured by Jodie Hadden Photography

Tiny Light Joseph is a loving, beautiful six-year old who is just finishing kindergarten. He is very close to his younger brother Sebastien and they love to play the iPad game Angry Birds together. Joseph also likes to wrestle with his dad and brother and bake cookies with his mommy.

Joseph has faced a lot of health challenges in his young life. He has been diagnosed with Down syndrome as well as atlantoaxial instability -- which is a problem with the alignment of his spinal cord. He also suffers from celiac disease -- an immune reaction to gluten -- and sleep apnea. Joseph has had five surgeries to put tubes in his ears to drain fluid and may need hearing aids.

But Joseph is doing his best to overcome his obstacles. Because of his hearing loss, he and his family have had to use sign language and this Tiny Light understands over 200 words. He also has an uncanny ability to read and recognize some words; he can pick out his favourite song on the iPod every time. While Joseph has a number of procedures ahead of him, his parents are optimistic about his future. "He perseveres and never gives up, be it on a level of Angry Birds or mastering the writing of his name," his mother says. "We are very proud of him."

Written by Karis Sengara