Méryn's Story

Images Captured by Painted Light Photography

www.paintedlightphotography.ca

Tiny Light Méryn is a social butterfly who loves making others laugh. She especially enjoys going on “parade” through the mall in her stroller, blowing kisses to everyone. This cheerful and affectionate four-year-old always greets her friends with a hug.

Within minutes of her birth, Méryn’s parents, Melonie and Jeremy, found out their baby girl had Down syndrome. Then doctors discovered two holes in her heart. The ventricular septal defect closed on its own, but the atrial septal defect is still being monitored to see if a stent will eventually need to be put in. Méryn has had several other medical complications, including chronic sinus infections and pneumonia, but every year, this strong little girl keeps getting better.

Méryn is very bright. While she can’t speak clearly yet, she understands both French and English. She is an expert on her iPad and she cherishes all kinds of books. This September, she will start kindergarten. Her mom and dad expect her to go on to post-secondary school and find a fulfilling career.

As the youngest of four children, Méryn is surrounded by so much love.  With her beautiful spirit and determination, she is an inspiration to everyone.  This Tiny Light has changed her family’s lives for the better. “We have learned what it means to truly love unconditionally. I know everyone says they do, but this experience makes you look at your love in an entirely different light. Méryn lives as we all should, enjoying each and every day!”

Written by Elaine Yong

Chloe's Story

Images Captured By Alana Couch Photography

www.alanacouch.com

Meet Tiny Light Chloe. This sweet girl was born in the Philippines and moved to Canada when she was just a few months old. Chloe is a very loving baby who brings immense joy to her parents. She enjoys listening to music, especially Twinkle Twinkle Little Star, and loves Dora the Explorer! Chloe is growing quickly…she is active and energetic and is just starting to walk and talk.

Chloe was born with Down syndrome and an atrioventricular septal defect (AVSD). When she was two months old, she underwent her first surgical procedure, a patent ductus arteriosus ligation. Two weeks after arriving in Canada, she had a bad cough and was taken to the emergency room. It was then that her parents found out she needed to go in for another urgent open heart surgery. It came as a complete shock because they were told by doctors in the Philippines that she would not require another surgery until she was two years old. In contrast, Canadian doctors provide this corrective surgery before six months of age.

These are challenging times for Chloe’s parents, as they are new to this country and are facing this situation alone. However, they are proud of their daughter and are hoping and praying for the best for her future.

Story by Emily Harrison

Jonathan's Story

Tiny Light Jonathan is a firecracker who is always smiling and laughing, even when he’s not feeling his best. This two-year old is a big flirt who enjoys being social with people, but his favourite buddy is big sister Kylie. He absolutely adores hanging out with her; he follows her around the house trying to touch her and pull her hair.

Parents Darlene and Roger only found out their little son had two congenital heart conditions, Tetralogy of Fallot and atrioventricular septal defect, and Down syndrome in the first week of his life.  Jonathan spent six weeks in the hospital before he went home. At three months, he had his first heart surgery. Then he had another procedure at nine months, and a major operation at 15 months. All three times, he had serious complications, which meant lengthy hospital stays. “Watching our child suffer has been the hardest things with this journey we have been on.”

Now, Jonathan is thriving. He is very busy scooting around on his bum, exploring the house. He enjoys socializing with other children at his Infant Development Program playgroup. Jonathan especially loves eating – soups and spaghetti are his favourite.

This Tiny Light will require a couple more open heart surgeries as he grows up, but this family has just gotten stronger with every obstacle. “When things are at their worst, there is always hope and things will get better. You can’t imagine how much joy your child will bring you. The future is full of possibilities.”

Written by Elaine Yong

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.

Caleb's Story

Images Captured by Petra King Photography

www.petrakingphotography.com

This is Tiny Light Caleb. Although he and little sister Hannah are eleven months apart, they are best friends and are often mistaken for twins. Full of energy, Caleb keeps his parents Sharon and Derrick on their toes.

During mom's eighteen week routine ultrasound, the technician discovered some “red flags and indicators” that suggested the baby may have Down syndrome as well as other medical issues.  A follow-up specialized ultrasound was booked and the realization of the news starting sinking in.  The entire family spent much time praying for a miracle. Their prayers were not in vain; the doctor reported the initial worries about small holes in their baby’s head and heart were amiss and he stated he had never seen a healthier heart.

In January of 2010, the family gave birth to their second daughter, Grace.  Sadly, she was born very sick and was taken off life support only thirty-one short days later.  During that time, Grace taught the family more than a lifetime of books or schooling ever could.

Now at the age of four, Caleb is one of the greatest joys in his family and friends' lives.  The also celebrated a new addition to their family when Zachary was born in October.  While it took a long time for the family to accept Caleb’s diagnosis - out of worry for the struggles he may face - their Tiny Light has taught them so much, "God is revealing to us everyday the joy and love Caleb has to offer. He has truly demonstrated what love, mercy and grace are really all about."

Story Written by Kristi Hall-Busque

Gregor's Story

Images Captured by Rhonda DeMone Photography

www.rdphoto.ca

Meet Tiny Light Gregor. Now that he is able to sit independently, there is no stopping him as he scoots around on the floor. He sure is curious and is always testing to see if you’re watching because he loves to get into everything! A few of this toddler's favourite things to play with are the cupboards, toilets and the dog’s dish. If Gregor was in charge of planning his day it would include: swimming, playing ball, reading books, music, dancing, and of course playing with his big sister Brynn. These two share a very special bond.

Gregor has Down syndrome. When he was born, he had to be resuscitated. His heart had a small hole and he had pulmonary hypertension. His patent ductus arteriosus, a blood vessel that is supposed to close over soon after birth, didn't close. Thankfully, all those issues have resolved over time but Gregor's medical problems did not end there. At 9 months, he became one of the youngest patients ever to be diagnosed with juvenile diabetes. He spent the next few months in and out of the hospital, battling various infections. Just before his first birthday, Gregor went into kidney failure from interstitial tubular nephritis. On top of all that, this brave boy was diagnosed with high-risk acute lymphoblastic leukemia in October 2010. After a year of chemotherapy treatments, Gregor is in remission. Now the three year old is not only surviving, but thriving.

The medical journey has been challenging for the family. Children with Down syndrome are at greater risk of heart complications, especially frightening for parents Duncan and Melanie. Their first son Bergen passed away from a very rare congenital heart disease when he was just eight months old. With Gregor, diabetes means a complicated daily routine of testing glucose and administering insulin. Plus, there are still two and a half years of chemotherapy ahead.

But Gregor is not only surviving, he is thriving. This amazing little man redefines what it means to be a hero. He was the honored hero for the Leukemia Lymphoma Society’s Team in Training campaign for 2011. Gregor has a love for life. He is strong and cheerful, his lips always curled into a smile. Sit with this Tiny Light and be prepared to cuddle! “When he rests his head on your shoulders he reaches up and plays with your hair. He is so full of love for everyone.” 

written by Tara Anderson

Ola's Story

Images Captured By Jag Nagra

www.turntopage84.com

Sing for Ola and she will likely show you her “bum wiggle” dance.  She loves to clap, smile, and play with her Basset hound, Basil.

Ola’s family members were unaware, when going into the delivery room, that their daughter would have Down Syndrome, but the moment Mom held her, she knew there was something different about her daughter.  She was immediately drawn to her.  It was only an hour later that the news was broken to them.  

Ola has been fortunate not experience other complications along with her diagnosis.

The hardest part for the family was the fear of telling those closest to them and worrying about their reactions; it was a relief when their families did not react negatively.  Looking ahead to Ola’s future, they worry about how she will be accepted and received by her peers.  Mom hopes that by advocating on Ola’s behalf, she can help parents understand that their children have more in common than they have differences.  They try to be as open and as approachable as possible when it comes to discussing Down Syndrome.  If one thing they say makes a single family feel better about their own child’s diagnosis then they have accomplished what they have set out to do.

Ola has taught her family how to take life a little slower and how to appreciate the small things.  Watching Ola develop and learn new tasks has been exciting for the entire family, including older sister Poppy.  Together they cherish each new accomplishment.

Their goal is to raise both daughters the same way and to put all they can into them.  Mom is sure that her Tiny Light, Ola, will be an inspiration to many.

Emma's Story

Images Captured by Simply Rose Photography

Meet Tiny Light Emma. This sweet little girl loves cuddling and spending time with her family. She has already been fishing and camping on the Skeena River!

At a 28 week routine ultrasound, Emma was diagnosed with Down Syndrome and an Atrioventricular Septal Defect (AVSD). This means she was born with holes between the top two chambers of her heart and the bottom two chambers of her heart. Emma had heart surgery on December 5, 2011 and it was a success! She will be followed by a cardiologist for the rest of her life and may or may not require additional surgery to further repair or replace a valve in her heart. So far, Emma is meeting all of her milestones and bringing so much joy to her family.  

Emma’s parents are overwhelmed by the incredible support shown by their family, friends, and others in their community. In her mother’s words: “family do more than they should because they love us...friends really do care...and strangers can be a great source of support and encouragement.” They hope that Emma will continue to touch and inspire those around her. “She has already shown us that we need to slow down and live in the moment.  So much of our life is out of our control and every moment has the potential to be so precious.”

Story by Emily Harrison

Tommy's Story

Images Captured by Birds on a Wire Photography

Meet Tiny Light Tommy.  This happy, little two-year-old enjoys singing, eating, playing, crawling and getting into trouble.


Tommy was diagnosed with Down Syndrome at birth, and his parents were shocked.  It took his father some time to accept the diagnosis.  The hardest part of their journey so far is living in a small town with no other children with Down Syndrome close to Tommy’s age.  His parents worry that he might be made fun of because of his disability.


Tommy keeps busy with physiotherapy, speech therapy, and occupational therapy.  He is healthy and his parents are confident that he will reach all milestones of a typical developing child, just on his own timeline.  They hope he lives a “close to normal” and happy life and gains independence in time.
“Having a child with Down Syndrome is not a negative thing, it is just a different type of normal.”

Story by Emily Harrison

Rachel's Story

 Images Captured by GingerSnaps Photography

Tiny Light Rachel can and will do anything she sets her mind to.  She is a happy, intelligent, and loving little girl who enjoys singing, swimming, reading, and swinging.  Rachel also likes playing practical jokes, especially hiding behind doors and jumping out at people yelling “Boo!”  Her siblings adore her, and she touches the hearts of everyone who takes the time to get to know her. 

Rachel’s parents were told that she might have Down Syndrome when she was just one month old.  They were anxious as they waited for the results of her tests.  When she was diagnosed, they were devastated.  However, they quickly came to the realization that they were given a gift.  Their faith helped them stay strong, and they made a point to focus on their beautiful baby girl, rather on her diagnosis.

Initially, Rachal’s parents worried about her future, but now know that “she will get as much out of life as she wants.”  They hope the same thing for Rachel as they do for their other children: to meet a nice boy, get married, and have a job.

As her parents say, “Having a child with Down Syndrome isn't always easy…but the joy that these amazing children bring, far outweighs the scary stuff.”

Story Written by Emily Harrison