Tyler's Story

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Images Captured By Caroline Ross Photography

Two and a half year old Tyler is a joyful little boy with a constant smile. His family calls him the "cuddle monster" because he's such a friendly little guy. This Tiny Light loves storytime. He also enjoys the outdoors, music and has a fondness for cheese.

When Tyler was born in 2009, he suffered from a lack of oxygen and was kept in the ICU for 14 long days. His parents thought the worst was over. But one day, after Tyler's dad left for a month long trip, his mom received devastating news. Their precious one year old son was diagnosed with cerebral palsy and a seizure disorder.

Understandably, it took some time for Tyler's family to come to terms with his diagnosis and challenges. He can't roll over, sit or stand unsupported, or feed himself. Also, Tyler is on three different types of anti-epileptic medications. Despite all that, Tyler makes strides every day, and always with a smile.

Tyler's mother admits she often worries about her son's future but she says her Tiny Light has shown her how precious life really is. "He is the love of our life and that smile takes the rough edges out of our daily struggles. Tyler is the angel in my life, our lives, and every life he touches."

Written by Catherine Urquhart

Fox's Story

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Images captured by Anna Jones Photography
www.annajones.ca


Meet Tiny Light Fox. This little guy is happiest when listening to music or spending time in his bouncy chair. Though he is still so young, he has already demonstrated immense strength and bravery.

Twenty-two weeks into pregnancy, Fox’s parents were told that their son had a serious heart defect. He was diagnosed with transposition of the great vessels, DORV (double outlet right ventricle), coarctation of the aorta, VSD (ventricular septal defect) and an ASD (atrial septal defect). When he was born, the umbilical cord was wrapped around his neck twice and he was blue. He was immediately given treatment to stabilize him until doctors could fix his heart. At just five days old, Fox was scheduled for a four to six hour surgery but ended up in there for 11 hours. There were some major complications, but Fox continued to fight and he pulled through. Complications from the surgery included collapsed lungs, pneumonia, chylothorax, blood infection, pulmonary hypertension, pulmonary stenosis and arterial flutters. Fox was in the cardiac care unit for four and a half weeks but made it home just in time for Christmas.

Fox will face more surgeries in his future but his parents remain positive. As his mother says, “I'm so proud of my brave little man ... To see my son struggle and fight for his life has taught me a lot about what's worth fighting for. We don't know what the future holds for Fox but we know he will continue to fight.”

Story by Emily Harrison

Méryn's Story

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Images Captured by Painted Light Photography
www.paintedlightphotography.ca

Tiny Light Méryn is a social butterfly who loves making others laugh. She especially enjoys going on “parade” through the mall in her stroller, blowing kisses to everyone. This cheerful and affectionate four-year-old always greets her friends with a hug.

Within minutes of her birth, Méryn’s parents, Melonie and Jeremy, found out their baby girl had Down syndrome. Then doctors discovered two holes in her heart. The ventricular septal defect closed on its own, but the atrial septal defect is still being monitored to see if a stent will eventually need to be put in. Méryn has had several other medical complications, including chronic sinus infections and pneumonia, but every year, this strong little girl keeps getting better.

Méryn is very bright. While she can’t speak clearly yet, she understands both French and English. She is an expert on her iPad and she cherishes all kinds of books. This September, she will start kindergarten. Her mom and dad expect her to go on to post-secondary school and find a fulfilling career.

As the youngest of four children, Méryn is surrounded by so much love.  With her beautiful spirit and determination, she is an inspiration to everyone.  This Tiny Light has changed her family’s lives for the better. “We have learned what it means to truly love unconditionally. I know everyone says they do, but this experience makes you look at your love in an entirely different light. Méryn lives as we all should, enjoying each and every day!”

Written by Elaine Yong


Chloe's Story

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Images Captured By Alana Couch Photography

Meet Tiny Light Chloe. This sweet girl was born in the Philippines and moved to Canada when she was just a few months old. Chloe is a very loving baby who brings immense joy to her parents. She enjoys listening to music, especially Twinkle Twinkle Little Star, and loves Dora the Explorer! Chloe is growing quickly…she is active and energetic and is just starting to walk and talk.

Chloe was born with Down syndrome and an atrioventricular septal defect (AVSD). When she was two months old, she underwent her first surgical procedure, a patent ductus arteriosus ligation. Two weeks after arriving in Canada, she had a bad cough and was taken to the emergency room. It was then that her parents found out she needed to go in for another urgent open heart surgery. It came as a complete shock because they were told by doctors in the Philippines that she would not require another surgery until she was two years old. In contrast, Canadian doctors provide this corrective surgery before six months of age.

These are challenging times for Chloe’s parents, as they are new to this country and are facing this situation alone. However, they are proud of their daughter and are hoping and praying for the best for her future.

Story by Emily Harrison

Tristan's Story

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Images Captured by Squishy Prints
www.squishyprints.com

Meet Tiny Light Tristan.  This handsome 16-year-old is smart, funny, and courageous.  He is eager to learn and has developed a passion for cars, world history, and geography.  He enjoys classic rock music, and saw his first two live concerts this year.  Tristan likes to spend his free time reading, going out for dinner, and going to movies.  He has already travelled to ten different countries, and has even gone parasailing!

When Tristan was five years old, he was diagnosed with Duchenne Muscular Dystrophy.  Since then, he has slowly lost all ability to perform any function that requires muscle use.  He has already been through two major surgeries during which he demonstrated immense courage and never complained.  It has been extremely difficult for his family to watch him go from being able to do things independently to requiring full support.  This, of course, was hard for Tristan, too.  In his father’s words, “As he was
losing the ability to do certain things, his wonder became replaced with fear and it is hard for us all to continually go through the changes.”

With the help of care workers, Tristan’s family will continue to support him as he gets older.  He will be able to get a job that requires talking and possibly computers.  Recently, he has expressed an interest in broadcast journalism so his family is trying to set up some interviews for him to meet people currently working in the field.  Since his diagnosis, Tristan’s family has gone to great lengths to allow him to experience as much as possible.  His father says, “I just want him to live - really live - without
being scared all of the time. I want him to be proud of the great and amazing guy that he is.”

Story by Emily Harrison

Hunter's Story

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Images Captured by Plus One Photography
http://www.plusonephotography.com/


Tiny Light Hunter is a happy eight year old boy who constantly inspires his loved ones, especially his mother Rachel and sister Jade. Hunter's smile and laughter are contagious, as is his enthusiasm for life.
Hunter's challenges started as a newborn, when he was having as many as 20 seizures a day. At just eight weeks, he was diagnosed with a seizure disorder and placed in an induced coma to help control the seizures. Five weeks later he was released, with doctors delivering the heart-breaking news that he would never meet "normal" milestones.
For Hunter's mother Rachel, the prognosis left her in disbelief, and wondering, "Why me?" But over time, she has learned to take one day at a time and focus on Hunter's happiness. Despite having epilepsy and global developmental delay, Hunter can now crawl, sit on his own and walk with assistance. He loves swimming, going on a swing and watching fireworks.
Hunter is still non-verbal, unable to feed himself and requires a wheelchair. Fortunately, friends and family have rallied together in support of this Tiny Light. And with their ongoing help, Hunter's mom believes her son will remain happy and healthy, and continue to inspire everyone he meets.

written by Catherine Urquhart

Jonathan's Story

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Tiny Light Jonathan is a firecracker who is always smiling and laughing, even when he’s not feeling his best. This two-year old is a big flirt who enjoys being social with people, but his favourite buddy is big sister Kylie. He absolutely adores hanging out with her; he follows her around the house trying to touch her and pull her hair.

Parents Darlene and Roger only found out their little son had two congenital heart conditions, Tetralogy of Fallot and atrioventricular septal defect, and Down syndrome in the first week of his life.  Jonathan spent six weeks in the hospital before he went home. At three months, he had his first heart surgery. Then he had another procedure at nine months, and a major operation at 15 months. All three times, he had serious complications, which meant lengthy hospital stays. “Watching our child suffer has been the hardest things with this journey we have been on.”

Now, Jonathan is thriving. He is very busy scooting around on his bum, exploring the house. He enjoys socializing with other children at his Infant Development Program playgroup. Jonathan especially loves eating – soups and spaghetti are his favourite.

This Tiny Light will require a couple more open heart surgeries as he grows up, but this family has just gotten stronger with every obstacle. “When things are at their worst, there is always hope and things will get better. You can’t imagine how much joy your child will bring you. The future is full of possibilities.”

Written by Elaine Yong

Julia's Story

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Images Captured By Rebecca Sehn Photography
www.rebeccasehn.com

Tiny Light Julia loves playing with her older sister Ashley. She also enjoys attending preschool and ending her busy days with a nice cuddle with dad!

A few weeks after Julia was born, she was diagnosed with Tetrasomy 15q Syndrome – a rare chromosome disorder where one is born with extra genetic material from chromosome 15. As a result, Julia was a very weak baby and it took her ten days before she could open her eyes. She was also subsequently diagnosed with scoliosis and underwent a total of 20 surgeries in just the first four years of her life. She will continue to require surgery every six months to monitor her scoliosis until she finishes growing.

This Tiny Light is an inspiration to her family with her unwavering determination and desire to overcome the challenges she faces. As her parents say, “She amazes us daily with her strength and character and brings so much joy to our family.”

Julia’s parents say the hardest part of their journey has been learning that her condition is not something that they can “fix”. As a message to other families in similar situations, Julia’s parents say, “Live life to the fullest, include your child in everything you can, follow their joy and take time for yourself.”

Story by Stephanie Bond

Annika's Story

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Images Captured by BROOKA PHOTOGRAPHIC
www.brookaphotographic.com



Tiny Light Annika takes on life with such determination and joy, waking up every morning with a smile and giggles. This two-year-old little girl has faced challenges, but she does not get discouraged.

At six months old, Annika began having seizures, which took away all the skills she had learned, including her vision. She was eventually diagnosed with Dup15q syndrome, a very rare genetic disorder in which a small part of the 15th chromosome has been duplicated. This means Annika has a number of medical conditions, including epilepsy, hypotonia, intellectual disability and speech difficulty.

Parents Lori and Michael do not see limitations for their daughter, only possibilities. Annika has been seizure-free for more than a year now, plus she can see, loves to crawl and swim. She is always full of laughs when she plays with her dog Lula or plays the guitar with Daddy. But the best is cuddle time!

This Tiny Light is the pride and joy of her mom and dad.   She has brought the family so much love and taught everyone about what really matters. “Annika showed up in this world bearing traits and qualities that people spend a lifetime trying to acquire. She is strong beyond measure, loving in abundance, joyful like she understands, and really understands why we are on Earth.”

Written by Elaine Yong

Braydon's Story

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Images Captured by Sprout Photography
www.sproutphoto.com


Tiny Light Braydon loves anything and everything hockey! He especially enjoys shooting pucks every morning with his big brother Dylan. Braydon’s absolute favourite team is the Calgary Flames and he was lucky enough to meet his heroes in person through the Make a Wish Foundation. He also scored a Calgary Flames themed bedroom and was visited at home by Flames centre Ollie Jokinen.
Braydon was diagnosed at a young age with a fatal form of Mitochondrial Disease – a disease caused by dysfunctional mitochondria; organelles that generate energy for the body’s cells and are responsible for 90% of the energy needed by the body to sustain life and support growth. Braydon’s parents believe their Tiny Light has spent approximately two thirds of his life in a hospital and are extremely thankful for his new room as it will be “...a quiet place for him to relax and enjoy life.”
Braydon’s strength and zest for life inspires his family. His infectious smile and personality help them remain focused on the positive aspects of their difficult journey. They have learned “how to love unconditionally and how to live in the now and not worry about tomorrow.” They hope their Tiny Light will continue to embrace life and live it to the fullest. As a message to other families dealing with similar situations, Braydon’s parents say to “embrace your little one and make the most of every single minute you have with them.”
Story by Stephanie Bond