Isabelle's Story

Meet Tiny Light Isabelle. This sweet five year old enjoys the simple things in life and loves being around people. Her favorite activities include blowing bubbles, playing with balloons, throwing and kicking a ball, and painting. She also loves playing with her dog Keida and going to kindergarten.

When she was born, Isabelle’s parents were surprised to find out their daughter had Down syndrome. They knew that having a child after the age of 40 was risky, but the pregnancy had gone smoothly and they were assured by their doctor that everything appeared normal. Isabelle spent the first month of her life in the hospital while her mother spent hours traveling back and forth from the hospital to their home to help support Isabelle's older sisters.

 Her parents are concerned about their daughter’s health, social skills, and ability to learn, but Isabelle has proven that she is capable of doing some amazing things. Sometimes her parents worry about her progress in a particular area, but then she’ll surprise them by overcoming yet another obstacle. She has proven time and time again that her diagnosis won’t stop her and her parents hope that with time, she will gain independence and live a happy and fulfilling life.

 While their lives have changed and challenges continue to arise, Isabelle has had an incredibly positive impact on her family. “We have reached milestones together, both successes and failures, which all bring us closer as a family. That's really what it's all about....loving each other for what makes us different. Isabelle reminds us of that every day!”

Story by Emily Harrison

Nicholas' Story

Images Captured by Cormack Photography

Tiny Light Nicholas loves cuddles and cartoons. He especially enjoys a good laugh and could easily spend a day giggling.

At four months old, Nicholas` mom noticed that his eyes were acting strange and rolling backwards. After going to the hospital, doctors could not find anything wrong with Nicholas. It took four to five additional visits to the hospital before Nicholas was diagnosed with a severe seizure disorder. Nicholas suffers from seizures daily and he has significant trouble breathing when he has a seizure. He has been admitted to hospital fifty-six times throughout his young life and is currently on four different medications and is tube fed.

Nicholas` mom`s reaction to his diagnosis was, “Why my son?” She credits this journey with Nicholas as an inspiration to “live life to its fullest every day.”

Nicholas always has a big smile on his face despite the challenges he faces. His perseverance and positive attitude inspire his family. As a note to other families dealing with similar circumstances, Nicholas’ parents say, “You need to take it day by day and whatever comes, you need to live everyday like it is your last.”

Story by Stephanie Bond

Jayme's Story

Images Captured By Jodie Hadden Photography

22 month old Jayme is a happy little girl who loves swimming, hugging,
people watching and laughing. And this Tiny Light is known for her
infectious giggle!

Jayme arrived in August 2011 after a healthy, full-term pregnancy but
soon after was diagnosed with Down syndrome. It was a shock to her
parents, who were also faced with the news that Jayme had a heart
defect. At just two months old she underwent open heart surgery.

Understandably, for parents Christie and Scott there have been some
tough days. They've worried about Jayme's quality of life and her
future. But the past few years have also shown them they are supported
by an amazing family and friends.

Despite any challenges, Jayme has given her family unconditional love.
And in turn they have come to realize that she can live a long,
healthy and happy life. One that will be even happier this summer,
when Jayme will become a big sister.

Written by Catherine Urquhart

Skyeler's Story

Images Captured by Proudest Monkey Photography

Meet Tiny Light Skyeler. This Tiny Light enjoys running, cuddles and playing hockey and trains. He especially loves hanging out with brothers Hayden, Colyn, Brogan and Parker.

Skyeler was diagnosed with Noonan syndrome in September 2012 – a congenital disorder often referred to as a ‘hidden condition’ as it displays no obvious signs, but consists of problems that may be varied and complex. Skyeler’s parents note that not all of his issues are covered by the Noonan syndrome diagnosis. In addition, Skyeler suffers from chronic constipation, oral aversion, developmental delay, subglottic stenosis, seizures, sleep apnea and vocal cord paralysis.

Skyeler’s parents state that the hardest part of the journey has been seeing their little boy so sick and completely helpless. They are inspired by how he has persevered and how he continues to remain strong and keep smiling.  “He has overcome so much, he gives us the strength to overcome our fears.”    

As a message to other families who have children with similar diagnoses, Skyeler’s parents say, “Don’t go a single day without embracing them in a hug, giving them a kiss and telling them that you love them. Make them know they are the absolute most important thing in life.”

Story by Stephanie Bond

Chloe's Story

Images Captured by Rebecca Hall Photography

Tiny light Chloe went to the doctor when she was 2 years old for what her
parents thought was a simple lazy eye. To their dismay she was immediately
transferred to Sick Kids Hospital. It turned out she had cancer in both
eyes. Within a few days, she had her left eye removed, but luckily the
doctors were able to save her right eye.  Though she had to undergo chemo
and other treatments, most of the time no one would have known she was sick
because she always stayed strong and had a smile on her face.

Like most little girls, Chloe enjoys singing, dancing and swimming. Though
she still needs frequent monitoring, she has now been cancer free for three
years. After the Children’s Wish Foundation granted Chloe’s wish to go to
Disneyland, she and her have family participated in the Wishmaker walk
every year to help raise money to fund other children’s wishes.

Nothing holds this Tiny Light back. Despite having only one eye, she does
all the activities any five year old would, including jumping on the
trampoline and even gymnastics. She has adjusted well to having one eye,
and even cleans her prosthetic eye by herself. Chloe’s mother says her
daughter is her hero, and a true inspiration to everyone.

Story written by Ardis Fisch

Joseph's Story

Images Captured by Jodie Hadden Photography

Tiny Light Joseph is a loving, beautiful six-year old who is just finishing kindergarten. He is very close to his younger brother Sebastien and they love to play the iPad game Angry Birds together. Joseph also likes to wrestle with his dad and brother and bake cookies with his mommy.

Joseph has faced a lot of health challenges in his young life. He has been diagnosed with Down syndrome as well as atlantoaxial instability -- which is a problem with the alignment of his spinal cord. He also suffers from celiac disease -- an immune reaction to gluten -- and sleep apnea. Joseph has had five surgeries to put tubes in his ears to drain fluid and may need hearing aids.

But Joseph is doing his best to overcome his obstacles. Because of his hearing loss, he and his family have had to use sign language and this Tiny Light understands over 200 words. He also has an uncanny ability to read and recognize some words; he can pick out his favourite song on the iPod every time. While Joseph has a number of procedures ahead of him, his parents are optimistic about his future. "He perseveres and never gives up, be it on a level of Angry Birds or mastering the writing of his name," his mother says. "We are very proud of him."

Written by Karis Sengara

Isabelle's Story

Memories Captured by Teagan Photography
www.teaganphotography.com

Tiny Light Isabelle brightens up everyone’s day with her big smile. She loves music and shakes her arms and legs with joy when she gets to dance with her mom.

Isabelle has cerebral palsy and experiences many seizures. Unfortunately, each time she has a seizure, her development takes a step back and often, she ends up in the hospital intubated. But this seven year old just keeps up her happy attitude and never cries.

Isabelle enjoys going to school with the help of an aide. She also loves playing with water, whether it’s bath time, swimming or standing at the sink. This Tiny Light is the sweetest girl in the whole word, according to mom Laura. “Always have hope and keep your head up high. It is hard work but your child is your life and you have to do what is best for them.”

Written by Elaine Yong

Karter's Story

Memories Captured by Lisa Marie Photography www.lisamariephotography.ca

Tiny Light Karter may not be able to speak, but he has touched the lives of hundreds of people all around the world. His amazing strength and ability to deal with tough challenges are such an inspiration.

Karter’s journey started just after he turned three months old. He had his first seizure - the first of hundreds more seizures to follow.  Following many MRIs, EEGs and long hospital stays, Karter was eventually diagnosed with epilepsy and infantile spasms. None of the medications and treatments worked so at 10 months old, he underwent neurosurgery to remove a portion of his right front lobe. That controlled the seizures for a little while, but eventually they came back. Karter had the rest of his right front lobe removed two years later.

Now Karter is almost 7 years old. His condition has left him with a global developmental delay - he is unable to sit or walk.  However, his family chooses to celebrate the small milestones. Their Tiny Light is full of joy and loves life. He enjoys playing “Peekaboo”, listening to music, and going to school. Mom Charlene says, “No matter how much you plan, life does not always work out the way you may have thought it would. Learn to take life moment by moment and enjoy the joy in each day.”

Written by Elaine Yong

Rhiannon's Story

Images Captured by InView Images

Tiny Light Rhiannon is a delightful, enthusiastic six year old who doesn’t
let anything slow her down. She loves colouring, playing ponies, and riding
her bike. She also enjoys her therapeutic riding lessons, playing hide and
seek, and listening to stories at bedtime. Despite her daily struggles,
Rhiannon has demonstrated an incredible ability to adapt and cope with any
challenges she may face, while still maintaining her cheerful demeanor.

When Rhiannon was born, her parents’ tears of happiness and pride quickly
turned to shock and anguish when they realized their daughter wasn’t
breathing. The doctors were able to resuscitate her, but this was only the
beginning of a series of obstacles for her to overcome. Her motor
development is significantly affected and she also has hypotonia, asthma,
eczema, a speech impairment, and difficulties with her social development.
While doctors have determined that Rhiannon has a neurological condition,
she has not yet been diagnosed. Her family is currently awaiting results to
determine whether she fits the criteria for Sotos syndrome, a rare genetic
disorder.

Not knowing their daughter’s diagnosis has been frustrating for Rhiannon’s
parents but they are relieved that doctors may finally be getting closer to
an answer. They have learned to appreciate even the little achievements and
have an immense amount of pride in what their daughter has accomplished so
far.

Story by Emily Harrison

Abbigail's Story

Images Captured By Annemarie ​Gruden Photography

Meet Tiny Light Abbigail. This Tiny Light loves playing outdoors and getting dirty in the mud with her brother and four-wheeling with her dad. She always comes back home to mom though and loves to dress up with stylish purses and shoes!

Abbigail is currently battling Opsoclonus Myoclonus Syndrome (OMS) - a rare neurological disorder which was caused by neuroblastoma. Opsoclonus refers to a disorder of eye movement where both eyes dart involuntarily. Myoclonus refers to brief muscle jerks and ataxia. Abbigail’s parents had noticed about a month prior to her diagnosis that she had been ‘shaky’ and had strange eye movements. Although her tumor was removed, she constantly suffers from symptoms of OMS and will endure a lifelong battle as there is no cure.

Abbigail’s parent’s state that the hardest part of the journey has been watching their “little girl be robbed of her innocence.” They note, however, that being faced with her diagnosis allowed them to gain perspective. As they say, “We no longer take the small things for granted or experience anything without remembering that one moment that almost took it all away from us.”

For those dealing with similar circumstances, Abbigail’s parents say, “Stay strong and trust your gut! As a parent, your gut and your heart is your best treatment plan guide.”

Story by Stephanie Bond