Nathan's Story

Images Captured by CM Photo Art

Tiny Light Nathan brings sunshine and smiles to everyone who comes close.  He has a fighting spirit, and has so far defied all the predictions of his doctors.  Nathan’s adorable chubby cheeks, wide, cheering smile, and his happy coos soften the heart of everyone who meets him.

Nathan has interhemispheric arachnoidal cyst, agenesis of the corpus collasum, missing splenium, nystagmus, sun setting eyes, and low oxygen saturation.  He faces a battle every day to stay alert, feed well, and to stimulate his brain to the fullest so that he can grow and reach milestones.  His challenge is to keep feeding well, get enough oxygen, and to live each day to the fullest because he is quite the sleepy little boy.  

By four weeks old, Nathan had already undergone two difficult surgeries.  He came through like a champion, and continues to do better than expected.  He is being followed by a number of clinics, and has captivated many with his adorable and radiant personality.  His parents, Mark and Ronda, are amazed at the strength and spirit that Nathan has shown the world.  The family takes huge comfort from the support of their friends, family, and church congregation, who have been very supportive of their journey with Nathan.

He and his older brother are both a joy to Mark and Ronda, who cherish every day with their boys.  Nathan may have called NICU home for a while and has spent time in hospitals, but he is in his real home now.  His family is so thrilled to have their tiny light with them every day.  There is no sure prognosis for Nathan.  His mom says, "There are numerous concerns such as epilepsy, mild to severe mental challenges, developmental challenges, vision issues and feeding problems," but his parents are hopeful that Nathan will live a full and very happy life.

Story written by Andrea Lee

Nevaeh's Story

Images Captured by D4 Photography

Tiny Light Nevaeh is always ready with a smile, a hug and a big beautiful
laugh. This spunky four year old girl has shown everyone that life is full of
love…all we need to do is get out there and live.

Nevaeh was diagnosed with Down syndrome at birth. Doctors were also
concerned about heart defects – atrial and ventricular septal defects – as
well as fluid in the lungs.  Though parents Melissa and Corey were
hopeful the heart would heal on their own, Nevaeh had to undergo
surgery at six months. Then at one year, this tough little girl had another
operation to correct craniosynostosis – a birth defect that causes the
sutures on a baby’s head to close too early.

Though the road hasn’t always been easy, especially dealing with
misconceptions about children with Down syndrome, Nevaeh is happy
and healthy. She loves to read books and mother her baby dolls. She is
especially good at drawing rainbows and enjoys breaking out the dance
moves with her younger sister. Communication is a challenge, but
Nevaeh knows over 200 signs.

This Tiny Light has a wonderful future in front of her and no matter
what path she chooses, her family will stand proudly at her side.
“Nevaeh is amazing. She has shown me that so many of us complain
and take things for granted. Enjoy the little things because we all know
it is the little things that make life worth living.”

Story Written by Elaine Yong

Kaylee's Story

Images Captured by D4 Photography

Kaylee was born December 4, 2010 and was instantly loved by so many. She arrived weighing 7 lbs 9 ozs, with beautiful blue eyes and appearing happy and healthy.

At five months, Kaylee started having seizures and no longer drank her milk. Following a series of medical tests, her parents received devastating news. Kaylee had Leigh's disease, a rare neurometabolic disorder that affects the central nervous system, causing loss of motor skills and eventually death. Kaylee's doctors didn't think she would survive much longer than a year. Happily, she proved them wrong. Despite many days in hospital, this tiny light had much to live for, such as visits with her Great
Nana and Great Grampie and Grandma and Grandpa Detka. Thankfully, her loved ones surrounded her with much love and happiness. With her mom she'd bake cakes, sing and dance in her wheelchair or read and watch videos. And at the end of the day, it was daddy time!

Kaylee loved her first trip to the swimming pool. Sadly, it was also her last. Kaylee passed away at just two and a half years old. But she left her loved ones with many beautiful memories. Just days before she died, she laughed really hard and for the first time said "Mommy," treasured gifts for her family, who will miss her always.

Story Written by Catherine Urquhart

Troy's Story

Memories Captured by Kim Culbert Photography

According to his mom Jodie, Tiny Light Troy was an “extremely easy” baby and Jodie considered herself very lucky.  Shortly after he turned one, though, Jodie and her husband Brian began to get concerned.  He wasn’t talking, and he seemed different from other children, although his parents didn’t really know why.

Around the age of two, Troy started having grand mal seizures and that led to assessment and therapy.  It took a long time to get the seizures under control, and then when he was four years old, Troy was diagnosed with autism spectrum disorder.  “

We felt scared and unsure how to help him,” Jodie says, “but relieved that we finally had some answers and a direction to go in and services to access.”

Jodie describes autism as an invisible disability, one that can make life painful in a very unique and different way.   But she also considers Troy’s autism “an opportunity for us all to slow down and look at life differently.”  Troy is funny and loving, treats everyone he meets equally and takes great pleasure in other people’s smiles.  He loves playing on the computer, playing tag, swimming, and making forts.     “Our hopes,” says Jodie, “are that Troy is eventually able to capitalize on his differences and that others accept him for who he is.”

Written by:
Jayne Akizuki

Henry & Ben's Story

Memories Captured by Brite Spot Photography

Meet Tiny Light brothers Ben and Henry. These Tiny Lights love playing with balloons, going for walks in their stroller and listening to music. They especially love getting tickled!

Both Ben and Henry were born with spastic quadriplegic cerebral palsy. Ben was born first and was diagnosed at about five months of age. Two years later, Henry was born and started showing similar symptoms at around four months of age. Ben and Henry are extremely dependent on others as neither child can walk, sit, talk, feed themselves or play. Both also suffer from vision problems, constipation and acid reflux.

Ben seemingly has more cognitive issues whereas Henry is more aware of his surroundings. The boys’ parents state, “The hardest thing is when we see other children or hear our friends talk about their children doing things we know our children will never do.” Mom Hayley recalled a tough moment breaking down in a park while watching two young boys run and play.

As a message to other families dealing with similar diagnoses, Ben and Henry’s family says, “I know it feels like you are alone and no one will ever understand what you’re going through but there are others out there and you will be surprised how much your family and friends will pull together to help you raise this child.” Hayley says her Tiny Lights are her inspirations. “They are not sad. They are extremely happy. Sometimes just looking at them all the problems I thought mattered really don’t.”

written by Stephanie Bond

Josh's Story

Images Captured By Lisa Marie Photography
www.lisamariephotography.ca

Meet 12-year-old Josh. This Tiny Light loves to play video games and is fantastic with computers. He has a wonderful sense of humor, a great imagination, and he excels at drawing and reading. Josh is smart, affectionate, and brings joy and laughter to those around him.

After almost a year of recovery and removing many drugs from his system, Josh has improved, but still has a ways to go. The intrusive OCD thoughts still creep in periodically, which is difficult for Josh to deal with; however, he is now back at school and able to go out in public again. Josh’s mother, Jodi, is fighting hard to increase awareness of PANDAS and hopes that Canadian doctors will soon be able to help Canadian families, as receiving treatment from the American doctors is very costly. It has been a long road for the whole family, but they will continue to do whatever they need to do to help Josh reach his full potential.

At age three, Josh was diagnosed with autism. He started an early, intensive behavioural program and made great progress. He was attending regular classes, getting straight A’s, and enjoying life. However, in November 2009, Josh’s behaviour suddenly changed overnight. He suddenly displayed symptoms of obsessive-compulsive disorder, anxiety, worries, and rages. After years of progress, he regressed to the level of a three year old. After a long, tough fight to get some answers, a doctor they hired from the US finally diagnosed him with PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections). This is a disease in which a strep infection reaches the brain, causing neurological symptoms.  Canadians doctors do not have a working knowledge of this condition, so Josh’s parents had to look for help south of the border. Josh received an IVIG (intravenous immunoglobulin) treatment, in hopes of maintaining adequate antibody levels. His family is also seeking help from a homeopathic doctor from Australia to pursue additional treatments.

Story  Written by Emily Harrison