Troy's Story

Memories Captured by Kim Culbert Photography

www.kimculbert.com

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

www.britespot.ca

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

Memories Captured by Lisa Marie Photography

http://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 by Emily Harrison

Sadie's Story

Images Captured By Joanne Bos Photography
www.joannebosphotography.blogspot.com

Tiny Light Sadie is the sweetest girl you will ever meet. She always has a smile on her face and loves being around people. The nearly three-year old is happy to share laughter, cuddles, kisses and unconditional love.
As an infant, Sadie wasn't progressing as she should and when she was just over a year old she was diagnosed with Angelman syndrome, which is a neuro-genetic disorder caused by missing part of the 15th chromosome. It is characterized by intellectual and developmental disability and sometimes seizures, but also by frequent laughing, smiling and a happy demeanor. Doctors originally said Sadie would not speak and may not walk, but she is already accomplishing things they said she wouldn't. She is crawling and pulling herself up in her crib. Walking seems like it's just around the corner.
Tiny Light Sadie has a challenging road ahead of her, but she is determined in her therapy and has already reached many milestones most kids with Angelman syndrome do not. Plus, she has great support from her older twin brothers and her parents. Sadie's mother says, "I hope for my daughter that she has friends and people that care about her. I hope that Sadie loves her life. I believe she does already!"

written by Karis Sengara

Jarome's Story

Images Captured By Cindy Moleski Photography
www.cindymoleski.com

After having three daughters, Tiny Light Jarome was a delightful addition to his mother’s life. 

Since she was 38 when she had him, Jarome had been tested for abnormalities while in the womb and she was told that her son was fine.  After birth, he joined his elated family at home.

It was after a serious illness at three months and at the insistence of his mother that doctors finally tested Jarome for Down syndrome a second time. His mother was devastated to learn that he had tested positive.  What followed was a difficult period for the family.  After grappling with alcoholism, Jarome’s mother achieved sobriety and she credits her son as instrumental in her recovery.  With unique understanding, he brings her the AA book on days that he sees his mother struggling.

Today, Tiny Light Jarome is in school full time and enjoys Spiderman, Toopy & Binoo, coloring and playing with his dog Ace.  He is loving and sweet and loves to give hugs and make his family laugh.  He doesn’t speak in full sentences but he makes himself understood!  Jarome’s mother says, “Every day I thank God for Jarome, I am so lucky to have him in my life!”

written by Angela Funk

Spencer's Story

Images Captured by Melissa Avey Photography
www.aveyphoto.com

Meet Tiny Light Spencer. This Tiny Light enjoys listening to music and playing with her older sister and new baby brother. Having a diagnosis of Down syndrome does not slow him down one little bit. Spencer is full of love and is always happy to share her joy with others.

Spencer was diagnosed with Down syndrome on her birthday. Her parents recall being upset, not with the diagnosis but with all of the uncertainty that came along with it. They note that there is a wide spectrum of ability for children with Down syndrome and they are constantly learning what Spencer is capable of on a daily basis. Spencer’s parents say their Tiny Light has taught them to be “more patient, to celebrate the little things.”

Despite the challenges Spencer faces, she is a very determined little girl who never gives up. Through her perseverance, her family is confident that she will accomplish anything she wants. As a message to other parents who have children with a similar diagnosis, Spencer’s parents state, “Every child is different. Never underestimate your little one.”

Story by Stephanie Bond

Cayden's Story

Memories Captured by Erin Shepley Photography

www.erinshepleyphotography.com

Tiny Light Cayden is a miracle baby who is now a loving six year old boy. He likes to run and play tag. He also enjoys going to the park and going for rides in his papa’s boat.

Cayden was born extremely premature at 27 weeks with multiple medical issues – organ failure, brain bleeds, lung bleeds and respiratory problems. He is missing part of his brain and another part is damaged. He spent the first few months of his life in the NICU, and also underwent six brain surgeries before he was a year old.  Cayden has recently been diagnosed with type 1 diabetes, which means multiple injections every day. Now he is also undergoing treatment for inattentive ADD.

But no matter what he has to endure, Cayden is accepting and loving. “He just deals with it with a smile and never complains. He even says ‘thank you mommy’ after I give him two needles!!” This Tiny Light has gross and fine motor delays, but he is working hard at school. The family just takes it day by day. “I hope my boy will grow into a loving man who will be successful, have a family and will give back to society.”

Written by Elaine Yong

Noah's Story

Memories Captured by Teagan Photography

www.teaganphotography.com

To most people, Tiny Light Noah would look like a normal small three year old boy with lots of energy. He spends his time swimming, dancing and playing with his dog Java, his brother Nick and sister Julia. But he has already gone through so much in such a short time.

Noah was born healthy at 30 weeks gestation weighing 3lbs 7oz. However, his condition quickly took a turn for the worse as doctors discovered a major bleed on the left side of his brain when he was just eight days old. This bleed caused him to have severe brain damage and a buildup of fluid on his brain. His parents were told his prognosis was not good. Soon afterward, Noah was diagnosed with a swallowing disorder and a mild form of cerebral palsy. But this Tiny Light has worked his whole life to overcome these challenges. He has been in intervention therapies since he was just four months old and he just keeps trying. Noah has worked very hard to learn to crawl and walk and recently he has been trying to overcome his struggles with speech.

More health issues could arise for Tiny Light Noah as he gets older. Recently doctors have been checking on a heart murmur. But Noah's mom thinks his future is full of opportunities and excitement. "Noah has had so many issues and hurdles in his short life, it's hard for me to remember them all. But one thing is, he is such a fighter. He never gives up and neither will we."

written by Karis Sengara

Oliver's Story

Memories captured by Michelle Wells Photography

www.michellewellsphotography.ca

Tiny Light Oliver was born with a unique set of challenges that sent him into surgery within the first five hours of his life.   In the womb, his large intestine had never fully formed, leaving him with an imperforated anus. This meant waste couldn’t leave his body.  During his first year, Oliver endured four difficult surgeries, plus numerous and extended hospital visits and tests.  

Now two years old, Oliver is a happy and curious boy.  He is a proud big brother and enjoys playing, exploring, climbing and dancing.  His laugh and smile are infectious and his family continues to be inspired by his perseverance and bravery.

Oliver’s health will continue to be monitored and it is uncertain what surgeries and procedures will be necessary to maintain his health.  But his family maintains a positive outlook and has high hopes for this Tiny Light.   Oliver’s father has a simple wish for his son - “...that he is comfortable and always happy with who he is and knows that despite where he's been, he is an incredible person.”

Written by Angela Funk

Luke's Story

Images Captured By Anelle Richardson Photography
www.anellerichardsonphotography.com

Like most five year olds, Tiny Light Luke is fascinated with Star Wars and loves to play outside. He enjoys his time in the backyard with his siblings battling as pirates or knights. Luke is also interested in history and one day might be headed on a vacation to Egypt to see the Pyramids and the Sphinx.
At the age of four, Luke was diagnosed with acute lymphoblastic leukemia. He immediately started on 13 months of intense chemotherapy involving more hospital visits and medications than he could probably count. Luke is now into the maintenance phase of his treatment which involves two more years of chemotherapy and countless more hospital visits.
Because Luke has a compromised immune system, his family built a big play structure in their backyard so he has a safe place to play with his two brothers and two sisters. His family also places a priority on helping others. They work with the Starlight Children's Foundation, the Children's Wish Foundation and a charity helping kids with cancer in Ecuador. In fact, Luke and his siblings have grown up forgoing birthday presents to donate money to their local children's hospital instead -- the same hospital where Luke would eventually be diagnosed and treated.
It's a long journey for this Tiny Light and his family, but Luke's mom is very proud of her tough kid and thinks he's wise beyond his years. "Luke is a little shining light and brings joy to those who haven't even met him."

written by Karis Sengara

Ethan's Story

Images Captured By Lindsay Hood Photography
www.lindsayhoodphotography.com

Meet Tiny Light Ethan. This determined Tiny Light revels in all his accomplishments.  After recently learning to walk, the sky is now the limit for Ethan.

Shortly after Ethan was born, he was diagnosed with Down syndrome and an atrioventricular  septal defect – three small holes in his heart. For the first six months of his life, he was on oxygen and is still currently awaiting surgery to repair the holes. In addition to these diagnoses, Ethan also suffers from acid reflux and sleep apnea. Ethan’s parents say that the hardest part of their journey so far is anticipating the heart surgery - knowing that their son will have to go through that is the most difficult aspect to overcome.

Despite the medical and emotional challenges, Ethan’s parents would not trade their journey for the world, as they say “he is such a happy little guy and it is a joy to be his parents.” They credit his diagnoses with allowing them to slow down in life and “...enjoy every minute.”

As a note to others with children facing similar diagnoses, Ethan’s parents state that it is not always a bad thing and to not “...worry about the medical problems, they will pass but your little one will bring you more happiness than you can ever imagine.”

Story by Stephanie Bond

Kole's Story

Images Captured By Jodie Hadden Photography
www.jodiehaddenphotography.com

There is something special about Tiny Light Kole that draws people in. He is trusting, loving, and incredibly affectionate. This two and a half year old absolutely loves music; you might find him grooving to hip hop, head-bopping to rock, or just plain dancing. He also loves water and his cars. In fact, “car” was one of his first words!
 
When Kole was just six months old, he began having a rare type of seizure called infantile spasms. He was put on a harsh steroid treatment called ACTH to control the seizures and has been seizure free for over a year. Doctors began genetic testing to determine the cause and the initial tests came back abnormal. It wasn’t until he was 14 months old that they diagnosed him with a rare genetic condition called Dup15q syndrome, in which a small part of his 15th chromosome has been duplicated. Though Kole has global delays and hypotonia, his incredible spirit and ongoing therapy has allowed him to make incredible gains already.
 
Kole has taught his parents to notice and appreciate the little things in life and to live in the moment. “Your dreams do change once you learn that your child has special needs. You realize that the things you thought were important aren’t. Happiness is the most important thing.” As with many other children with rare conditions, little is known about what the future holds for this Tiny Light. He has a wonderful team of therapists and doctors that are all working together to help him be the best he can be. Kole’s mother encourages others facing similar journeys to “take help from others when you can, be kind to yourself, and know that you are your child’s advocate and you will find the strength even at the darkest hour to do what you need to do to help him/her be their very best.”
 
Story by Emily Harrison

Holly's Story

Memories Captured by Kalago Photography

www.kalagophotography.com

Tiny Light Holly is only 10 months old, but she dazzles everyone with her smile. And even through some tough times, she has always been a bright ray of sunshine.

Holly was diagnosed in utero with hypoplastic left heart syndrome, which meant only half of her heart was formed and functional. She underwent her first open heart surgery less than 24 hours after birth. But just before Holly was four months old, doctors discovered her heart function was deteriorating. Transplant became the only option. A month later, this Tiny Light received her second chance at life.

Transplant isn’t a cure so Holly will need to be on immune-suppression drugs for the rest of her life. But her parents Angela and Curtis have seen a dramatic improvement in their daughter’s health. “She has been a different baby since – so full of beans, so pink and so full of life. I dream that she will grow up to have a normal life and enjoy a normal childhood.”

Written by Elaine Yong

Hope's Story

Memories Captured by Cindy Moliski Photography

www.cindymoleski.com

One year old Hope has already made a lasting impact on everyone that knows her.  This Tiny Light shows incredible strength and a strong will to live, despite all the challenges she faces on a daily basis. Hope loves music and smiles at her brother and sister when they sing to her. She loves hugs and kisses and having her back rubbed. Hope also enjoys bath time and smiles the whole time while she plays and tries to swim.

When Hope’s mother was 20 weeks pregnant, she found out that her daughter would be born with microcephaly and alobar holoprosencephaly, a condition in which the brain fails to split into two hemispheres. Hope has one solid brain and most of her brain is fluid, though her brain stem is fully intact. Her middle facial features failed to develop, so she has a severe cleft lip, no palate, and no cartilage in her nose. Hope also has diabetes insipidus and suffers from seizures. 

When she was born, doctors did not believe that Hope would survive, but her loving parents would not give up on her. It has been a long, frustrating battle to get her the medical care she needs. While no one knows what the future holds for this little fighter, her parents have faith that their daughter will continue to prove to everyone that strength and determination goes a long way. “We take each day with her as a special gift we have been given...we treasure every single moment we have with her. She inspires us to move forward and live each day to the fullest, all the while fighting for her to get the very best medical care she deserves.”


Story by Emily Harrison

Katia's Story

Memories Captured by Anna Epp Photography

www.annaeppphotography.com

Tiny Light Katia is a sociable little girl who can make friends wherever she goes. She enjoys drawing, colouring and playing with her doll Annabelle, and big brother Justin.

Katia was diagnosed with transposition of the great arteries of the heart shortly after birth. When she was born, she appeared to be slightly blue but her doctors indicated that it was normal. After a nurse took Katia for a bath and noticed the blue colour in her fingers, she was taken for an oxygen test. The test showed a 75% result where a normal result should have been over 95%. Subsequent to this, doctors took Katia for more tests and were able to diagnose her.

Katia’s parents state that the hardest part of the journey so far has been Katia’s surgery. Katia was operated on when she was only 8 days old. “It was very hard to see her with many plugs on her and always hear the machines beep when numbers weren’t high enough.” A week after her surgery, Katia developed an arrhythmia and was put on medication for a year.

Despite the arrhythmia complication, Katia remained strong and pulled through. She will have to visit a cardiologist to monitor her condition for the rest of her life but has managed to stay stable since her surgery. As a message to other families dealing with similar circumstances, Katia’s parents say, “You have to be strong and have hope. Enjoy every precious day with your child. Every day is a gift and we have to enjoy it!”

Story by Stephanie Bond