Julia's Story

Images Captured By Rebecca Sehn Photography

www.rebeccasehn.com

Tiny Light Julia loves playing with her older sister Ashley. She also enjoys attending preschool and ending her busy days with a nice cuddle with dad!

A few weeks after Julia was born, she was diagnosed with Tetrasomy 15q Syndrome – a rare chromosome disorder where one is born with extra genetic material from chromosome 15. As a result, Julia was a very weak baby and it took her ten days before she could open her eyes. She was also subsequently diagnosed with scoliosis and underwent a total of 20 surgeries in just the first four years of her life. She will continue to require surgery every six months to monitor her scoliosis until she finishes growing.

This Tiny Light is an inspiration to her family with her unwavering determination and desire to overcome the challenges she faces. As her parents say, “She amazes us daily with her strength and character and brings so much joy to our family.”

Julia’s parents say the hardest part of their journey has been learning that her condition is not something that they can “fix”. As a message to other families in similar situations, Julia’s parents say, “Live life to the fullest, include your child in everything you can, follow their joy and take time for yourself.”

Story by Stephanie Bond

Annika's Story

Images Captured by BROOKA PHOTOGRAPHIC

www.brookaphotographic.com

Tiny Light Annika takes on life with such determination and joy, waking up every morning with a smile and giggles. This two-year-old little girl has faced challenges, but she does not get discouraged.

At six months old, Annika began having seizures, which took away all the skills she had learned, including her vision. She was eventually diagnosed with Dup15q syndrome, a very rare genetic disorder in which a small part of the 15^th chromosome has been duplicated. This means Annika has a number of medical conditions, including epilepsy, hypotonia, intellectual disability and speech difficulty.

Parents Lori and Michael do not see limitations for their daughter, only possibilities. Annika has been seizure-free for more than a year now, plus she can see, loves to crawl and swim. She is always full of laughs when she plays with her dog Lula or plays the guitar with Daddy. But the best is cuddle time!

This Tiny Light is the pride and joy of her mom and dad.   She has brought the family so much love and taught everyone about what really matters. “Annika showed up in this world bearing traits and qualities that people spend a lifetime trying to acquire. She is strong beyond measure, loving in abundance, joyful like she understands, and really understands why we are on Earth.”

Written by Elaine Yong

Braydon's Story

Images Captured by Sprout Photography

www.sproutphoto.com

Tiny Light Braydon loves anything and everything hockey! He especially enjoys shooting pucks every morning with his big brother Dylan. Braydon’s absolute favourite team is the Calgary Flames and he was lucky enough to meet his heroes in person through the Make a Wish Foundation. He also scored a Calgary Flames themed bedroom and was visited at home by Flames centre Ollie Jokinen.

Braydon was diagnosed at a young age with a fatal form of Mitochondrial Disease – a disease caused by dysfunctional mitochondria; organelles that generate energy for the body’s cells and are responsible for 90% of the energy needed by the body to sustain life and support growth. Braydon’s parents believe their Tiny Light has spent approximately two thirds of his life in a hospital and are extremely thankful for his new room as it will be “...a quiet place for him to relax and enjoy life.”

Braydon’s strength and zest for life inspires his family. His infectious smile and personality help them remain focused on the positive aspects of their difficult journey. They have learned “how to love unconditionally and how to live in the now and not worry about tomorrow.” They hope their Tiny Light will continue to embrace life and live it to the fullest. As a message to other families dealing with similar situations, Braydon’s parents say to “embrace your little one and make the most of every single minute you have with them.”

Story by Stephanie Bond

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