Isabelle's Story

Images Captured By Meanie Keenan Photography

www.melaniekeenanphotography.ca

Isabelle is better known by Belle, and she is like any other child.  Her future is wide open and filled with possibility.  She is interested in singing, spending time with her grandparents, swimming, watching movies, time to herself and is becoming quite skilled with a digital camera. 
 

Belle was born in 2001 and diagnosed officially with Down Syndrome on the morning of her birth.  Initially, her family was scared as all they knew of it was that there was potential for a short life span.  Since then, they have learned a lot about the disorder and feel fortunate that Belle does not have any of the typical health issues often associated with Down Syndrome.  Her family works hard to ensure that Belle is given the opportunities she seeks and they focus on inclusion.  Although it has not always been easy, her parents have educated many of her teachers and peers as to what she is capable of.  They are fighting for change, as they often feel that society can be misguided and unwilling to make adjustments to their views on disabilities. 
 

Her parents advise other families to take things one day at a time, to set goals for your children, and to works towards them together.  Their motto, since the beginning, has been to raise Belle no differently than they would any other child.  While they are afraid that someone may take advantage of her, they are equally confident that they will teach her the difference between right and wrong, hopefully avoiding such a situation.  
 

Belle has and continues to educate everyone around her – she brings out the best in people!   Her family truly believes that she was given specifically to them and they will make certain that she lives a happy, full life filled with joy and love.

Liam's Story

Images Captured by Kalago Photography

www.kalagophotography.com

Tiny Light Liam is one determined little guy. He loves being outside, running and climbing, but cuddling with mom tops the list.

At five weeks old, Liam was diagnosed with tuberous sclerosis, a rare multi-system genetic disease that causes non-malignant tumors to grow in the brain and on other vital organs. Liam was born with four tubers on his brain and one on his heart. This caused multiple seizures – between 20 and 80 every day – until he underwent brain surgery at two years of age. Since then, Liam has been seizure-free. Just recently, the family was told the tuber on his heart is gone now too!

Now four years old, Liam has other physical and mental delays as a result of his disease. He has also been diagnosed with autism. The journey has been tough for mom Camilla. “You feel scared, helpless, sad…it’s a rollercoaster of emotions.” But she finds plenty of inspiration in her beautiful Tiny Light.

Written by Elaine Yong

Aiden's story

Images Captured By Amber Light photo and design

http://www.amberlightphoto.com/

Four year old Aidan is a happy little boy who finds joy in even the simplest things in life. This Tiny Light is known for his genuine laughter, which is rather contagious. He loves dancing to music, playing with his iPad, and going on nature walks. Aidan also has an incredible sense of direction and an amazing memory for places he's been before.

After Aidan was born, he developed more slowly than other kids his age, but still managed to reach all expected milestones. Then, at age two, his parents Christine and Spencer noticed his speech was regressing. It eventually disappeared altogether and Aidan lost interest in his surroundings and other people. Following several examinations, Aidan was diagnosed with autism.

Over the past two years Aidan has started making verbalizations and can now use pictures to communicate. Still, he has motor issues and sensory deficits, which have resulted in him eating just 10 items. With continued therapy, his parents are hopeful that Aidan will continue to make progress.

In September, this Tiny Light will begin classes at a special needs kindergarten - an important milestone for Aidan and his loved ones, who have grown closer during the challenges of the past four years. As Aidan's mother Christine notes, her son has taught them what's important in life and to live in the moment.
written by Catherine Urquhart

Sarah's Story

Images Captured by Melissa DePape Photography

www.melissadepape.com

The first few weeks of Sarah's life were spent in the hospital because she was unable to eat on her own.  A genetic test was done after she started missing milestones and an answer was found to the concerns her family was having.  Sarah was diagnosed with a rare chromosome deletion which has resulted in global delays and feeding obstacles.  Unfortunately, there are no other documented cases of the same deletion to date.

Since her diagnosis, her family has learned she also has a seizure disorder.  Sarah has started Anat Baniel Therapy, which has resulted in positive changes both physically and cognitively for her.  Through online groups, her mom has met other parents who have children with unique diagnoses, making the journey a little less lonely.

Now, at three years of age, Sarah can walk and works hard to keep up to her big sister Lily.  She is learning sign language and loves to attend preschool.  Sarah absolutely adores Lily, is extremely affectionate with her kitty and loves to dance.  Just like all other little girls, she manages to get herself into trouble - she can often be found climbing on everything. Sarah has recently found her independence; learning how to communicate her strong opinions however she can. 

Though it has been tough for Sarah's family to deal with an unknown future, this Tiny Light makes it all worthwhile. "As each month passes and we see her continue to grow and change, we are inspired by her smile and hard work. We will continue to work hard ourselves to supper her wherever her dreams take her."

written by Kristi Hall-Busque

Nyana's Story

Images Captured by brandOne Studios

www.brand1studios.com

Tiny Light Nyana came into this world fighting and she hasn’t stopped since.  Born at 27 weeks gestation, she weighed just 1110 grams.  Now at 18 months, this toddler is walking and getting into everything.

Nyana spent 222 days in the NICU at BC Children’s Hospital before parents Karen and Don were able to bring her home.  “I remember when she was so tiny, being afraid to love her, not knowing if she’d survive.  Being afraid to hold her, not knowing what all the tubes and wires did and whether she was in pain.”  Nyana was on the ventilator for more than two months.  It saved her life, but it caused chronic lung disease known as bronchopulmonary dysplasia (BPD).

To help her lungs strengthen, Nyana went home on BiPAP support – non-invasive ventilation.  She also needed a feeding tube because she did not have the lung capacity to take a bottle.  Except for bath time, Nyana was always tethered to a machine.  “We tried very hard to maintain a sense of normalcy for her, but it’s difficult to do normal everyday things when you’re literally tied to a 12-foot leash.” In March, she had progressed far enough to only need respiratory support for naps and overnight.  Soon, she’ll be weaned down to just nights.

The journey has been full of difficult challenges but it has only made this family stronger.  Nyana’s long-term prognosis is very promising. Lung tissue regenerates over time so this amazing Tiny Light will soon be running around the soccer pitch with all the other children.  “I hope she continues to thrive. I hope she goes on to greatness and remembers that she can do anything.”

Story Written by Elaine Yong

Peter's Story

Images Captured by Victoria West

www.victoriawestphotography.com

Meet Tiny Light Peter. He loves playing with his brother and sister, building forts, drawing, reading and playing hockey. He also loves spending time cuddling with his cat, Arthur.

Growing up, Peter seemed to develop at an early age and was walking when he was just six months old. However, after his first birthday, his behaviour changed and oftentimes he could be easily panicked and would throw tantrums. His behaviour became an increasing issue as he grew older and his parents sought opinions from several different sources who all claimed he was just “young” for his age. When Peter entered kindergarten, his troubles continued and he was subsequently diagnosed with autism.

Peter’s diagnosis helped his parents to better understand his behaviour and anxiety. They realize that every individual is affected differently by autism and take pride in being able to celebrate the areas in which Peter excels, such as math and athletics. Peter’s parents say that the most amazing part of this journey has been “...meeting other parents whose children have similar diagnoses. There is an understanding and a bond between us. We know the struggles and the difficulties and the joy that our children bring us.”

Peter continues to inspire his family with his journey and has taught them that his diagnosis will not define his life. Peter’s family hopes their tiny light will grow to be “happy...find love and understanding...a sense of belonging...[and]...that he will accomplish his dreams.”

Story by Stephanie Bond

Luke's Story

Images Captured By Phorever Photography

www.phoreverphotography.ca

Tiny Light Luke may not be able to speak, but he knows how to make his voice and opinion heard.  There’s the “Hmm hmm” with the same tone and pitch as we would say “Thank you.”  And this five-year-old has beaten the odds to say the most important word – “Mum.”

Luke’s parents, Rachel and Nick, knew there was something different with their baby boy when he was first born.  Though he was not premature, he weighed only 3lbs 7oz.  It took months for genetic testing to be complete, and when the family got the news, it was devastating.  Luke has an extremely rare chromosome disorder called mosaic trisomy 22.  This means he has an extra chromosome 22 on some cells of his body.  Children like Luke are often small in size, have heart issues and are severely delayed.

It is now a “wait and see” approach for this family.  Luke faces at least two surgeries in the near future – he needs a feeding tube to hopefully alleviate eating issues and he awaits surgery for his tethered spinal cord.  Luke also struggles with psychological issues and needs medication to sleep.

But there is a lot of hope for this Tiny Light.  He is doing well at his special school with caring teachers who have helped him learn to trust.  Luke loves watching Barney and Pocoyo, but his favourite TV time is enjoying Star Wars with his best buddy, Daddy.  He also likes showing his muscles and going for walks.  “Keep up the fight, don’t forget to breathe, and always believe in your child’s potential.”

Written by Elaine Yong

Sam's Story

Images captured Susan Carmondy Photography

http://www.susancarmody.com/

Tiny Light Sam is one determined little guy. He has to work hard for everything because he has delayed motor development, but he is motivated and full of joy. At nearly three years of age, this smiling toddler is full of kisses and waves. His amazing spirit shines through.

Parents Amanda and John knew their youngest son was not reaching his milestones, but they never imagined he would be diagnosed with a neurological disorder. Until recently, doctors were not sure what Sam had, but now it has been determined to be Glut1 deficiency syndrome. This is an extremely rare genetic condition that impairs brain metabolism, potentially causing a wide range of symptoms including development delays, speech difficulties and muscle twitches.

Sam is on a special ketogenic diet that is used to treat Glut1 patients and it is working well. He has been free of seizures and is now completely off anticonvulsant medication.  While he isn’t talking yet, he is getting more mobile as he learns to creep along furniture.

The future for this Tiny Light is uncertain, but his family has learned to live in the moment. Big brother Charlie is Sam’s biggest champion, and the boys love spending time together. “Sam has helped us to slow down. He takes his time to reach each milestone and we celebrate all of his gains.”

Written by Elaine Yong

Nickolas' Story

Images captured by Studio 1079  

www.studio1079.com

Tiny Light Nickolas may spend as much of his day as he can playing sports – he especially loves running and lacrosse – but he always has time for hugs and kisses. This happy 6-year-old also has a creative side. He is a keen storyteller and has even made his own comic book.

Nikolas has ADHD and a neurological disorder known as sensory integration dysfunction (SID) or sensory processing disorder (SPD). This means he has difficulty taking in, processing and responding to sensory information about the environment and from within his own body. The result can be unusual ways of responding or behaving. For example, in the classroom, students with SID might act impulsive, resist group activities, fidget in the seat, or appear inflexible and stubborn.

Unfortunately, SID is not a recognized diagnosis. This has been challenging for Nickolas and his parents, Duane and Jacquie. “School has been very difficult. Most educators have never heard of SPD/SID, or if they have they have no understanding of all the elements involved and how truly difficult day to day life is for our son.”

The family takes it one day at a time. Nickolas is now on medication, and that is helping him focus better in school. This Tiny Light’s incredible resilience amazes his parents every day. “We tell him each and every day, at every opportunity, how much he is loved and that he can do anything he wants to in life.”

Written by Elaine Yong

Jaymee & Autumn's Story

Images Captured by Craig D. Phootography

www.craigdphotography.com

Tiny Lights Jaymee and Autumn are twins who share one important personality trait —they are fearless.  While Jaymee is easygoing and happy with herself, Autumn is independent and strong.

When the girls were born, parents Heather and Ed were told something was wrong with the size of their heads. Further testing confirmed a diagnosis of lissencephaly with secondary microcephaly. Lissencephaly literally means “smooth brain”—a  rare brain formation disorder which results in a lack of development of brain folds and grooves. Microcephaly is an abnormally small head. The long-term prognosis was not encouraging, but Jaymee and Autumn have grown and developed at their own pace.

These Tiny Lights love bowling, swimming and riding their bikes. Spending time playing with their brother and sister also top the list for Jaymee and Autumn. The road has been difficult but the family feels blessed. “We try to go day by day, even year by year. I hope they learn as much as they are able to and just are happy and healthy.”

Story Written By Elaine Yong