Jeremie's Story

Jeremie doesn't let anything stop him from having fun and living life to the fullest. He enjoys hockey, badminton, riding a scooter and being a good friend and brother to Justin and Cedric.

This Tiny Light was around four months old when his family was told that his heart was not as healthy as it should be and he was diagnosed with sub aortic-stenosis. Then, when Jeremie was three years old they were told that he needed surgery. Jeremie was put on a bypass machine that stops the heart so doctors could work on it. Mom Melanie was so afraid of losing him but with family support they got through this difficult time. In no time he was running around, back to his old self, as if nothing had happened.

Melanie is proud of how strong Jeremie is. He may need more surgery in the future, only time will tell. Melanie hopes he grows up to be whatever he wants to be. She says, “We can always fear the worst, but I would rather stay positive.”

Story written by Lori Meers

Images Captured by Jennifer Boggett Photography

Thomas' Story

Tiny Light Thomas was born with a severe case of spina bifida. At 34 weeks, Mom (Lisbet) found out there were issues with her otherwise normal pregnancy. Daddy (Benoit) was deployed overseas with the military. Sitting in the doctor’s office alone, Lisbet was told that the baby had an L1-L2 myelomeningocele on his back. The odds were one in 20 that the baby would survive birth and one in four that he would survive the massive surgery to put the spinal cord back in place.

It took almost a week to contact Benoit and then another week to get him home. Lisbet and Benoit were then sent to BC Children's Hospital to have further testing and await the arrival of the baby. Thank goodness for Grandma, who flew in from Ontario to help take care of the girls, Sophia, five, and Violette, almost two.

Thomas was born by emergency Caesarean section and had a four- to five-inch opening in his back. The first time Lisbeth saw her beautiful “Superman,” he was being taken to the OR for his first set of two major surgeries. The uncertainty of so many things was challenging. Lisbeth was once told by someone, “You grieve for the perfect little baby that you thought you would have, and then you look at your baby and are amazed and overjoyed at the beautiful baby you have."

Thomas is a survivor. An amazing, handsome blue-eyed, red-haired Tiny Light. He’s a quiet, cuddly, gentle little guy who takes everything in stride. The most amazing thing for the parents is seeing the love that his sisters give him. They are so excited to have a little brother and excited at the things they’ll be able to do with him. Thomas inspires them to be calm and grounded, and that makes them stronger as a family. All you have to do is look at him, and he makes you smile. Don't worry about what these children can't do and just celebrate what they can. This disability is not a disability at all, but an ability to adapt, amaze and define their tiny world. "The future for Thomas is bright."

Story written by Lori Meers

Images Captured by The Light Within Photography

Holden's Story

To look at Tiny Light Holden with his bright red curls and big smile you wouldn’t suspect the conditions that he endures. Just like any other 3-year-old boy, he loves his trains, trucks and construction vehicles, has a rich imagination and is easily immersed in games, books and puzzles. When playtime is over, he loves his cuddles, especially with his big brothers and their dog. However, Holden’s family knows only too well what he soldiers through.

Holden experienced a traumatic birth that at age 8 weeks resulted in a failure to thrive. By 3 months, it was evident that he was developmentally delayed and by 7 months, he was set up for various therapies. Devastatingly, Holden began having seizures at 14 months which led to a diagnosis of epilepsy and then a further diagnosis of diabetes. As his family came to terms with these treatable but life- changing conditions, it became apparent that Holden was not developing speech that, to this day, remains severely impaired and undiagnosed.

The first few years of Holden’s life have been filled with doctors poking and prodding, therapies with a team of professionals, hospital visits and tests, not to mention daily finger pokes to monitor his blood sugar and medications for his epilepsy. Since being put on an insulin pump just before his third birthday, his development has become more typical and he is able to live a life that resembles that of a boy his age, but he must still constantly navigate a medical system that would intimidate any adult. Holden often administers medical treatment to his stuffed animals in an attempt to normalize his experiences and never fusses or fights his family or the doctors who are working to manage his conditions. Proud mom Corinne says, “He’s the bravest hero I know.”

While Holden’s future is bound to be challenging, his fighting spirit is sure to keep him strong. As he grows up, Corinne hopes that he’ll see his conditions as things that he manages, not as things that manage him. It’s been hard for his family to watch this Tiny Light start his life with so many struggles, but in Corinne’s words, “We’ve mourned his health and ease in life. We’re ready to celebrate the amazing things he has coming his way!”

Story written by Angela Funk

Images Captured by Mercedes Leung Photography

Ryley's Story

Tiny Light Ryley was just like any young little boy. He developed normally, learning to crawl, walk, sit and even say his first words. However, when Ryley was only two, his parents began noticing that he was “lost in his own world.” He became withdrawn and no longer spoke.

At three and a half, Ryley was finally diagnosed with severe autism disorder, intellectual disability and possibly ADHD. Ryley’s parents were scared, shocked, angry, sad and uncertain about what was ahead of them but it didn’t take them long to face their Tiny Light’s diagnosis head on. They created Ryley’s Heroes to bring awareness and raise money for autism.

Ryley is now a happy six-year-old. He’s an incredibly loving and friendly boy who loves running, jumping, balancing, swinging and dancing. His parents believe that this unique journey has made them stronger and more powerful.

Ryley’s parents believe this Tiny Light’s future will hold many things. Although they fear that he’ll never be able to communicate, have a conversation, get married or have that “dream job,” they hope and dream that Ryley is truly happy and that he accomplishes whatever he wants to do in life.

Written by Valerie Bush

Images Captured by Lisa Marie Photography

Naomi's Story

At only two months of age, the parents of Tiny Light Naomi knew that something wasn’t quite right about their little girl. After getting their Doctor to perform some tests, they learned that Naomi had epilepsy and that her eyes hadn’t fully matured.

Medication was able to keep little Naomi’s seizures at bay, and eventually her eyes matured. Just before the age of three, Naomi was diagnosed with Autism Spectrum Disorder. Mom, Esther, says, “The hardest part of this journey thus far has to be grieving the family ideals I had thought I would have.” At just over five years old, Esther finally got to hear Naomi say ‘Mommy’ and ‘Daddy.’ After waiting so long for her daughter to utter these words, hearing them for the first time was so beautiful and made her cry.

Naomi has a wonderful sense of humour. She wakes up every day happy and with a smile. She loves to swim, jump on the trampoline, swing on the swings, and being sung to. She also loves to be tickled and going for walks. Naomi’s parents worry about what the future holds for their little girl, but have learned to focus and celebrate every one of her victories. They are hopeful that their Tiny Light, now six-and-a-half years old, will continue to progress through therapy. Although being diagnosed with Autism was “heart crushing” to hear, Naomi’s parents have found comfort in finding people who understand what they are going through.

Written by Valerie Bush

Images Captured by Anelle Richardson Photography

Clarisa's Story

Tiny Light Clarisa was born a fighter. At age 17 months she had a seizure, which led doctors to determine that Clarisa had had a stroke while in the womb. As a result of the stroke, Clarisa has a scar on the left side of her brain. She’s unable to use the right side of her body as well as the left and she now has to take medication three times a day to control the seizures that can sometimes last up to two hours.

Last summer, along with the diagnosis of seizure disorder, Clarisa was also diagnosed with cerebral palsy. This Tiny Light is a very strong, powerful spiritual being who practices her Aboriginal culture, smudging with mom and sister. She loves to paint, colour and draw and loves anything to do with the water. She also loves to watch her favourite rabbits on TV, Max and Ruby. She is a very helpful and affectionate little girl, giving kisses lovingly.

Mom Lisa says, “Never give up on your child” and “Patience is key.” She realizes that not only must she make time for herself but also for her other daughter. Like any mother, she wants Clarisa to follow her dreams and not let her disabilities get in the way. One thing that Lisa fears is that Clarisa will face problems at school with the other kids but she knows that educating the kids on Clarisa’s disabilities is key to this not happening.

Mom believes Clarisa’s future holds anything that her Tiny Light sets her sights on. Her determination will help her achieve a strong, positive impact in the world.

Story written by Valerie Bush

Images Captured by Sprout Photography

Mekayla's Story

Tiny Light Mekayla is an incredibly strong, determined young woman who inspires everyone around her. Mekayla loves being in the water and frequently goes swimming with her younger sisters. She enjoys being around things and people that are familiar to her, especially her family members. She’s full of laughter and smiles and her gentle nature always draws people in.

Mekayla was born with an occipital encephalocele (a water balloon-like protrusion on the back of her head), which was removed when she was only four days old. Her other diagnoses include Arnold Chiari malformation II (a malformation of the brain), agenesis of the corpus callosum (an absence of the corpus callosum), epilepsy, global developmental delay, hypotonia, facial dysmorphism, cleft lip, cleft palate, reflex in the right kidney (2/3 of her right kidney is dead), scoliosis and congenital left hip dislocation.

She’s also prone to urinary tract infections, ear infections, and has a low immune system. Mekayla is completely dependent on others for all aspects of daily living. She has no form of communication and is wheelchair bound. She is legally blind and her level of hearing is intermittent. Doctors predicted that she wouldn't live past the age of five; however, Mekayla's perseverance and the support from her family have enabled her to overcome an incredible amount of adversity and achieve milestones that doctors said she’d never reach.

This entire journey has been difficult for her mother, Tammy, who was only 22 years old and single when she gave birth to her eldest daughter. Extensive genetic testing following Mekayla's birth revealed that Tammy was the carrier of the gene that likely caused her daughter’s extensive medical conditions. She was told that there was a 5% chance that she’d pass that gene onto her next child. The decision to have more children was a difficult one; however, both of Mekayla's sisters were born healthy and now help take care of their older sister. Despite the frequent hospital visits, surgeries, illnesses, and difficult days, there are still many moments of joy. Tammy hopes that Mekayla stays happy and healthy and that her story will continue to inspire others.

Story by Emily Harrison

Images Captured by Sandy Tidy Photography

Jordan's Story

Tiny Light Jordan is a very happy and content little boy. He loves life and has fun with it. His family celebrates every one of his milestones and try to give him the experiences that any little boy would have.

Jordan was born 16 weeks premature at only 1 pound, 6 ounces. He spent 169 days in the NICU because he was severely ill and had multiple complications. His parents figured early on that they’d have a special needs child. Doctors feared that Jordan wouldn’t even make it, but miraculously he pulled through.

Within a year of Jordan’s life, he was diagnosed with cerebral palsy, severe hearing loss, cortical visual impairment, acid reflux and chronic lung disease. It was quite an emotional year for this Tiny Light’s parents. Jordan’s mom Cheryl says, “It’s a true miracle that he’s even alive.”

Jordan can do many things; it just takes him a bit longer than most. But, he’ll likely never walk or talk and will need technology to assist him in his daily needs, as well as an aid or helper to feed, dress and change him. However, Jordan will be able to control his own power chair and communication device, giving him some sense of individuality. His parents hope that Jordan will be a strong person and that people will respect him for who he is. Jordan is a lovable three and a half year old, who people love being around. His parents only hope that this will remain true in the future.

Written by Valerie Bush

Images Captured by Merryfields Photography

Keira's Story

Meet Tiny Light Keira. She likes listening to loud music and watching the birds at the bird feeder. She loves chocolate and is very social, finding great joy in going to preschool and spending time with her siblings. When Keira was a baby her parents were uncertain if she’d get the chance to grow to enjoy all these things.

Keira and her twin sister Sarah were born at 25 weeks gestation to a biological mother who’d had no prenatal care and had used drugs and alcohol during pregnancy. As a result, Keira was born with cerebral palsy, brain damage, global development delays and impaired hearing. Keira and Sarah's parents opened their arms to both girls, devoting their time and love to all three of their children.

Despite Keira's diagnosis and difficulties, she’s a very determined girl. If she falls down, she gets right back up. Keira's parents do sometimes fear that people will have trouble understanding her because she’s not able to communicate clearly quite yet, but they say, "Keira has a spark. When people meet her she makes them feel special. We hope that this continues and she is able to spread her spark as she grows."

Story written by Adrianna Tailleur

Images Captured by Andrea Divesser Photography

Griffin's Story

Tiny Light Griffin is a healthy and active seven-year-old whose perseverance and determination makes him an inspiration to everyone he knows. While some things take him longer to learn, Griffin has proven himself to be a very talented piano player, and enjoys reading, listening to music, skiing, skating, and rollerblading.

Griffin was born at 23 weeks gestation and weighed only 580 grams. Doctors warned his mother, Jamie, that he only had a 20% chance of survival. After two months in the NICU, he went into renal failure, which led to candida (a yeast infection) in his blood. It spread to his eyes, and when the infection finally cleared, the ophthalmologists realized he had stage three Retinopathy of Prematurity (blindness as a result of being born prematurely). Griffin was taken in for laser therapy to try to stop the progression, but he was also diagnosed with Rush Disease, which caused the ROP to progress more rapidly. By the end of the week, Griffin had lost his eyesight completely.

While the news was devastating, Jamie happily took her son home after five months in the hospital, and has since watched him grow into a happy, strong, and determined little boy. Griffin is working hard to learn braille and is learning how to use his white cane. He is comfortable with who he is and is “as stubborn as a mule.”

Jamie is confident that her son will continue to learn and grow, and sees each day as holding new and exciting possibilities. “Never hold them back because of your own fears - allow them to spread their wings. One of these days, you'll watch them soar.”

Story by Emily Harrison

Images Captured by Pam McCready Photography