Julia's Story

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

Braydon's Story

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

Peter's Story

Images Captured by Victoria West

www.victoriawestphotography.com

Meet Tiny Light Peter. He loves playing with his brother and sister, building forts, drawing, reading and playing hockey. He also loves spending time cuddling with his cat, Arthur.

Growing up, Peter seemed to develop at an early age and was walking when he was just six months old. However, after his first birthday, his behaviour changed and oftentimes he could be easily panicked and would throw tantrums. His behaviour became an increasing issue as he grew older and his parents sought opinions from several different sources who all claimed he was just “young” for his age. When Peter entered kindergarten, his troubles continued and he was subsequently diagnosed with autism.

Peter’s diagnosis helped his parents to better understand his behaviour and anxiety. They realize that every individual is affected differently by autism and take pride in being able to celebrate the areas in which Peter excels, such as math and athletics. Peter’s parents say that the most amazing part of this journey has been “...meeting other parents whose children have similar diagnoses. There is an understanding and a bond between us. We know the struggles and the difficulties and the joy that our children bring us.”

Peter continues to inspire his family with his journey and has taught them that his diagnosis will not define his life. Peter’s family hopes their tiny light will grow to be “happy...find love and understanding...a sense of belonging...[and]...that he will accomplish his dreams.”

Story by Stephanie Bond

Jacob's Story

Images Captured by Sourpuss SMILES Photography

 www.sourpusssmiles.ca

Meet Tiny Light Jacob.  He loves baths and walks, but one of his most favourite pastimes, by far, is hanging out with his big brother Jackson.  Playing with toys and reading books are just a couple of the interests the pair share.
Jacob was born with Tricuspid Atresia and Hypoplastic Right Heart Syndrome (HRHS).  HRHS is a congenital heart defect in which the right ventricle of the heart fails to grow and develop properly.  As a result of the syndrome, blood flow is insufficient and infants often appear to be what is called “cyanotic” – or blue.  Jacob has undergone three heart surgeries, and will require at least one more when he is around two years of age.
Jacob’s parents hope that their Tiny Light will “... continue to smile and laugh ... [and] ... that he is able to grow old.”  They are in awe of his ability to take and appreciate each moment at a time.  His smile and laughter never falters despite being surrounded by nurses and doctors at times.  As a message to others, Jacob’s parents say, “Enjoy each moment you have with your child, as you don’t know what the next will hold.”
After only recently undergoing his third heart surgery, Jacob is doing exceptionally well.  He is still on oxygen, but he is at home with his family instead of in the hospital.  His parents expect that he will be off the oxygen soon and that he will be ready for his next surgery – with smiles, laughs and his unwavering determination.

Story written by Stephanie Bond

Bronson's Story

Images Captured by Misty Dawson Photography

www.mistydawson.com

Meet Tiny Light Bronson.  At just five days old, this tiny light began chemotherapy treatments after being diagnosed with Stage 4S Bilateral Adrenal Neuroblastoma with metastases to the liver.  This type of cancer is so rare that to date, there have only been 45 cases recorded in the world.
When Bronson was seventeen days old, his doctors suggested radiation therapy in order to accelerate the treatment process.  After three days of low dose radiation, Bronson started to demonstrate signs of drastic improvement, but his liver did not recover the way his doctors had hoped and the only treatment option was a liver transplant.  Fortunately, Bronson’s Auntie Sarah Beth was a match and they both underwent a successful liver transplant surgery when he was two-and-a-half months old.
As of today, Bronson is a happy and healthy nine-month-old little boy who loves to crawl around and get into anything and everything he can.  He has proven that he is a fighter, and continues to inspire his family and others with his brave journey.  His parents have received letters from people all over the world offering their support, claiming they have been changed and inspired from Bronson’s story.  His parents consider this to be “... very humbling …” and reflect that their son’s perseverance has taught them that “… even when things are looking grim, there is always hope ... take time to love your family more, and continue to thank God for the gift He has given you.”

Story by Stephanie Bond

Owen's Story

Images Captured By Vanessa Balenovich Photography

Meet Tiny Light Owen. He loves learning new things in school – especially numbers and the ABC’s. He also enjoys being outdoors either playing soccer or just sitting and watching for airplanes to fly by in the sky.


At age two, Owen’s parents had noticed that he was not developing at the same rate as other children his age. that he had great difficulty when communicating, and that he had severe sensory issues. After a consultation with a medical professional, he was diagnosed as Non-Verbal with Moderate to Severe Autism. According to his parents, Owen “...could not communicate [and] he had no pretend play skills.”


Owen has to work extra hard to accomplish simple tasks that come naturally to other children. The determination and progress that he has demonstrated, particularly with his verbal communication skills, inspires his parents every day. As they say, “He has opened up a whole world for our family, we don’t just get through the day, we embrace the day. He inspires [us] every day to be the best [parent], person and advocate for Autism that [we] can be.”


As a message to others, Owen’s parents say that “this road with children with Autism is a hard one, it is a road less travelled for most ... always be optimistic.”


Story by Stephanie Bond

Rachel's Story

Images Captured by Melissa DePape Photography

Meet Tiny Light Rachel. With three lovable brothers to keep her busy, this little one never ceases to amaze those around her with her happy spirit.


Before Rachel was even born, doctors diagnosed her with having Trisomy 18, otherwise known as Edwards Syndrome. Edwards Syndrome is a rare chromosome disorder in which an individual has a third copy of material from chromosome 18. Due to the nature of the disorder, it has often been characterized by the medical community as a disorder that is “incompatible with life.”


Although the view of the disorder from the medical community was very difficult to deal with, Rachel’s parents persevered and underwent a very “...scary pregnancy, full of sorrow and confusion, hoping against hope that she might be one of the rare ones.” 


Despite the fact that Rachel has medical challenges, she is a very happy child and provides a “constant ray of sunshine” in her family’s home. Like every other child her age, she “smiles, laughs, waves and plays with her toys.” Her joy continues to inspire her family on a daily basis, and they consider her “...a miracle from heaven...[and]...wouldn’t trade her for the world.”


Story by Stephanie Bond