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