Skyler's Story

Images Captured by Studio 1079

Skyler Jones is the family funny guy, a loving big brother and a superhero to his family. When he was born, doctors had difficulty determining exactly what diagnosis best fit his array of symptoms. Eventually, most agreed that FG syndrome (Opitz–Kaveggia syndrome) fit best. What followed were years of therapy, surgery and many procedures which Skyler has suffered with gracious kindness and a good heart. None of this has stopped him from loving life, especially his family, animals and sports. Skyler is on several special needs sports teams, including hockey and baseball and he loves to swim. He’s enamored of farm life, riding his horse Arnie and recently learning to drive a tractor! 

Skyler can do many things in spite of the challenges that his illness presents. With two heart surgeries behind him and a new medical implant to assist his bowel, Skyler is medically stable and charging into life with the gusto and good cheer of most typical pre-teen boys. He’s learning his limits and finding that he can do many fun and exciting things. He’s raising chickens and helping with lambs. He loves his little brother, and family time is very special, and funny, because of Skyler.

His parents’ greatest fear is that Skyler will be held back because other people will look at his disabilities and assume he can’t accomplish goals. Skyler has proven otherwise and will continue to impress everyone who gives him a chance. His family takes great comfort in his hilarious sense of humor and the friends they have made while traveling along this medical journey with Skyler. His mom’s advice to anyone facing a similar challenge is to seek support and take time for self-care. She says, “No one should have to be strong all the time.”

Written by Andrea Lee


Logan's Story

Images Captured by Michael K Photo

Meet Tiny Light Logan

Tiny Light Logan was born 15 weeks premature due to an emergency C-section as a result of his mom, Heather, having severe pre-eclampsia. For the following several months, Logan spent several months in the ICU fighting for his life because he was so underdeveloped.

While in the hospital, he had hernia surgery, three urinary tract infections, and influenza, as well as countless other setbacks. He still ate with a feeding tube and had developed Oral Aversion, was weak and tiny, but Logan progressed and four and a half months later, Logan was ready to come home.

Flash forward: several years have now passed and Logan is now celebrating his 6th birthday!  He still has global delays but he is catching up more and more each day. He is now in Kindergarten and loves school. He is active and loves playing with his classmates: running and climbing on the playground.  

Logan still eats by way of feeding tube, but he has proven to be a fighter. He wins new battles every day, from improved verbal and motor skills to tasting more foods on his own. Heather says, "He’s the toughest, smartest little guy around and he’s going to be something special when he grows up!"

All of us at Tiny Light wish Logan a very happy 6th birthday and hope that he had a blast at his party on April 12th. Continue to grow by leaps and bounds!

Written by Valerie Bush

Caleb's Story

Images Captured by Memories By Me

Meet Tiny Light Caleb

Ten-month-old Caleb is a happy little boy with an amazing smile. He loves being on his floor mat, rolling and playing patty-cake. Caleb is very affectionate and enjoys touching people's faces. He also loves to eat!

Following Caleb's 20-week ultrasound, his parents learned their baby might have Down syndrome. Overall risk factors were low, so no other testing was done. Several weeks after his birth, a diagnosis of Down syndrome was confirmed, along with a heart condition known as Tetralogy of Fallot. Caleb's oxygen levels were below normal; at one point in hospital, he was rushed to a resuscitation room. Caleb’s parents, Kayla and Chris, were taught how to do a life-saving procedure on their son should they have had similar episodes in the future.

In the following months, there were seemingly endless appointments for physiotherapy and occupational therapy, along with trips to the cardiologist. Then, at the age of seven months, Caleb had successful heart surgery in Vancouver.

Now approaching his first birthday, Caleb is surrounded by a loving and supportive family and friends. Kayla and Chris say they couldn't have asked for their son to be anyone but the loving little boy that he is, and they know he will continue to bring joy to many people's lives.


Written by Catherine Urquhart

Jaxon's Story

Memories captured by Kirstin Gibson


Meet Tiny Light Jaxon. This two-year-old lights up the hearts of all who come across him. Jaxon’s parents instantly knew there was something very different about him; he didn’t cry or eat and he was rarely awake for the first year of his life. He missed almost all of the typical milestones and has had to struggle to accomplish all of the things most of us take for granted.

Jaxon has a genetic condition called Prader-Willi syndrome. This means his paternal 15th chromosome is missing or damaged. It causes many symptoms for him, including constant insatiable hunger and the inability to know when he’s full. He also has limited muscle strength. Because obesity is a major concern for Jaxon, his entire family has had to make a huge healthy lifestyle change.

Jaxon receives extensive physical and speech therapy every week. He loves books, swimming, singing and dancing and loves any animal. He has an unwavering spirit and is always happy. His parents believe Jaxon is a precious gift and his three sisters love him unconditionally. Jaxon is an inspiration to all of them and his condition has brought them closer together as a family.


Written by Valerie Bush

Hailey's Story

Images Captured by Kalago Photography

Hailey is an amazing little girl who is always happy and smiling. Now, about 20 months old, this Tiny Light loves to play with her babies and adores her dad, Darren, and her 2 older brothers, Dylan and Braydon.

Hailey was born in February 2013 at 28 weeks gestation, and weighed just 2 lbs 3 ounces. Her arrival nearly came even sooner, at 22 weeks, but doctors were able to delay labour. Then mother Tasha developed preeclampsia and seizures. During that last seizure, Hailey's heart stopped, prompting an emergency caesarian section.

Incredibly, Mom and daughter both survived. Hailey spent 70 days in the NICU, and underwent surgery to repair hernias. Once healthy, she went home weighing 3 pounds 12 ounces. Perhaps not surprisingly, she is sometimes lovingly referred to as Thumbelina.

This little fighter is now meeting all her milestones, and weighs more than 16 pounds. It has been a difficult journey for the entire family, but the future looks very bright for Hailey. Her parents are confident that she will grow into a wonderful young lady who can accomplish anything she wants.

Story Written by Catherine Urquhart

Abigail's Story

Images Captured by Hartfelt Images

Abigail is delightful. You can see her beautiful personality in her eyes. She loves being held and carried about by her nine siblings, and she has begun to smile in the cutest way.

When Abigail was two days old, the Lactation Consultant and midwife both broke the news to parents, Mark and Claudia, that they suspected Abigail might have Trisomy 21 (Down syndrome). This was confirmed when they were given the results of Abigail's karyotype test on January 16th, when she was ten days old. By the time Mark and Claudia received the "official" diagnosis, they were prepared for it. Abigail ended up being very ill and was admitted to BC Children's Hospital. Abigail survived her difficult first week, and tests for heart defects, GI defects, and septic infections, among others, all came back negative.

Prior to learning of Abigail's diagnosis, her parents had little knowledge of Down syndrome, and what the complications were. They knew that cognitive function is usually delayed, but found out a host of additional problems that can arise (immediately, or as the child grows). Mark and Claudia have been blessed to be put in contact with some positive people who have "tons" of experience with Down syndrome; other parents of children with DS, a naturopathic doctor and a neuro-developmental specialist. Talking to people who have experience is very reassuring and removes some of the fear of the unknown. They've met people who have inspired them, people whose paths may never have crossed if they hadn’t been blessed with this challenge.

Abigail surprised the family by rolling over from her tummy to her back before she  turned one month old. She has repeated the feat many times since. A child who has DS is not "the product of an accident" which happened at conception. Her parents believe it is his/her design and destiny that was planned by an all-wise Creator long before he/she was conceived, and He makes no mistakes. They feel privileged to be chosen to be her parents.

 "Most of our hopes and dreams for Abigail are the same as those we have for all our children. It may take her longer to reach the same milestones, and we may all have to invest more time and effort in helping her achieve those goals. We look forward to seeing her start to crawl, walk, ride a bike, communicate, laugh & learn, read a book, sing. We want to see Abigail grow up to be a capable and contributing adult in our family, church, and society."

Lori Meers

Brady' Story

Images Captured by Joel Smith Photography

Meet Tiny Light Brady. This sweet boy has overcome so many obstacles already and brings immense joy to everyone who knows him. He’s a busy little guy who attends school and completes approximately 24 hours of Intensive Behavioural Intervention (IBI) therapy every week. In his down time, he enjoys swinging, looking at books, listening to music and playing on his iPad.

When Brady was 3–4 months old, his parents noticed that he didn't have very good head control and had difficulty pushing up on his tummy, but at this point they weren't overly concerned. Shortly after, he started having some gastro-intestinal problems and was developing hives. Brady’s parents also noticed some “quirky” behaviours, including Brady’s seeking pressure on his feet and pocketing food in his mouth for long periods of time. He also liked to balance toys on his feet above his head while lying on the floor. By 15 months, Brady had learned to crawl, but was not communicating verbally, did not play with toys in a functional manner and entertained himself with the same toy or book for extended periods of time.

Brady began occupational therapy, physiotherapy and speech and language therapy at approximately 18 months of age, but wasn't diagnosed with autism until he was two years and three months old. He’s now six years old and has made many gains. Brady is toilet trained and now sleeps in a bed instead of a crib. He has yet to find his voice, but his family and therapists are working hard to find the most effective alternative communication for him. He’s a flight risk and wears a tracking bracelet on his ankle and will soon be receiving an autism assistance guide dog, which will help keep him safe and also provide him with companionship.

Despite the challenges his family faces on a daily basis, Brady's mother, Amy, remains positive. She says, “It hasn’t always been easy and at times it’s been completely overwhelming, but, at the end of the day, we’ve been blessed with the most beautiful, sweet and happy little guy. I look at him and I see such potential and I know that regardless of what obstacles he has to overcome in his life he’ll always have the most loving and supportive family to help him along the way. Dealing with everything that comes with a diagnosis of autism has made us closer as a family and forced us to slow down and to appreciate the smallest of accomplishments. For that I’m grateful.”

Story by Emily Harrison


Logan's Story

Images Captured by Kristy MacLeod Photography

Meet Tiny Light Logan. Logan was a boy who was full of energy and smiles. He loved
playing soccer, colouring, playing with stickers, going to gym class, and building Lego.
He loved the Pittsburgh Penguins, and wanted to meet ‘The Cake Boss’ one day.

Logan was diagnosed in April 2009, at the age of three, with stage four high-risk
Neuroblastoma, a very aggressive form of childhood cancer where cancer-causing
tumours grow in nerve tissue throughout the body. Children with high-risk
Neuroblastoma have much higher chances for having their tumours reoccur or
increase rapidy. About 50% of tumours in this case are extremely aggressive. Logan
had experienced chemotherapy, surgeries, a stem cell transplant, and
radiation therapy. He was doing well for almost a year.

Sadly, in December 2010, shortly after Christmas, he relapsed. What his family
thought was a sinus infection was actually a 5x7 centimeter tumour in Logan’s right
cheek bone. Logan started receiving four to five days of chemotherapy every 21 days,
paired with multiple blood and platelet transfusions.

Logan’s Mom’s advice is, “You’ve just got to take it day by day, try to be positive for
your child.” Her dreams were that Logan would one day be cured and live a long
happy life and leave all his pain behind, even though doctors told her that her dreams
likely would not be a reality.

Her biggest fear was losing her son, and after Logan’s five yearlong battle with his
disease, he earned his angel wings on April 17, 2014. He fought so hard. He is a hero,
an inspiration, and he is missed endlessly by his family.

“Even the smallest of feet have the power to leave everlasting footprints upon this
world.” ~ Lisa Clarke ~

Rest in paradise, Logan. December 27, 2005 to April 17, 2014. Gone but never

Story written by Kelsey Walker

Sebastian's Story

Images Captured by Simply B Photos

Sebastian brought soul and love to the world, a wonderful baby to everyone who cared for him. When he was born, several problems were identified and eventually he was diagnosed with CHARGE syndrome, a very complex disorder that includes physiological abnormalities, heart defects and breathing problems.

Immediately after his birth, he was whisked into intensive care to manage his breathing and other problems, leaving his mom and dad shocked and shaken. Sebastian was a born fighter, though, and overcame many hurdles, including several surgeries, meningitis and a stroke.

Although he only lived just shy of eleven months, and it was a frightening time for his family because of his many lengthy hospitalizations, Sebastian brought so much intense love that the world is a different place because of him. “Sebastian was loved by everyone he encountered and he brightened their days,” says his mom Amanda. Sebastian was an old soul with a big smile. He was a unique baby, enjoying a good dose of CNN and cautious with his precious smiles. His favorite toy was his stuffed “Wolfy,” a dignified and wise animal that matched Sebastian’s powerful personality. He went through so much, and had so little time to enjoy life, that he’s easily described as a “grumpy little man,” but Sebastian was a loving and serious little boy, engaging and intelligent beyond his lifespan.

Sebastian passed away with the love of his family surrounding him. His legacy and memory burn brightly for all the people touched by his strength, intensity and heart-melting smile.

Story Written by Andrea Lee

Jamieson & Simone Stories

Images Captured by Theresa Brereton Photography

Michelle and Joseph have not one, but two Tiny Lights.

Tiny Light Jamieson was diagnosed with Down syndrome when she was born seven years ago. The family knew that the likelihood of her having Down’s was very high; however, they were still shocked when she was born and it was confirmed. Jamieson works very hard at speech therapy and sees herself like any other kid. She loves swimming, gymnastics, reading, riding her bike and Brownies.

Tiny Light Simone had a stroke at birth and, as a result, was diagnosed with cerebral palsy. She was also just recently diagnosed with a seizure disorder, which is the result of her stroke. Simone has trouble climbing, running and playing like other kids but she still does it all. At four years old, she has great resilience, strength and determination. She loves swimming, dancing, drawing, playing with her “babies” and playing at the park.

The family has learned so much about themselves through this journey. They hope both of their children find happiness and fulfillment in their lives. Mom Michelle says they’ve overcome their family’s obstacles by “having faith in the good people” and by surrounding themselves with people who love them. Mom and Dad, along with Jamieson and Simone’s other brother and sister, are very proud of them and they all try to remain focused on living in the moment.

Written by Valerie Bush