Tyler's Story

/

Images Captured By Caroline Ross Photography

Two and a half year old Tyler is a joyful little boy with a constant smile. His family calls him the "cuddle monster" because he's such a friendly little guy. This Tiny Light loves storytime. He also enjoys the outdoors, music and has a fondness for cheese.

When Tyler was born in 2009, he suffered from a lack of oxygen and was kept in the ICU for 14 long days. His parents thought the worst was over. But one day, after Tyler's dad left for a month long trip, his mom received devastating news. Their precious one year old son was diagnosed with cerebral palsy and a seizure disorder.

Understandably, it took some time for Tyler's family to come to terms with his diagnosis and challenges. He can't roll over, sit or stand unsupported, or feed himself. Also, Tyler is on three different types of anti-epileptic medications. Despite all that, Tyler makes strides every day, and always with a smile.

Tyler's mother admits she often worries about her son's future but she says her Tiny Light has shown her how precious life really is. "He is the love of our life and that smile takes the rough edges out of our daily struggles. Tyler is the angel in my life, our lives, and every life he touches."

Written by Catherine Urquhart

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


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

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

Benjamin's Story

/
Images Captured by Melissa DePape Phoography
www.melissadepape.com

Benjamin is a three year old boy who continues to defy all odds against him and light up the lives of everyone who meets him. He challenges family, friends and others who come into contact with him to look at disability through his eyes and see just how "normal" someone with a disability truly can be.
 
At sixteen months of age, Ben was in the Stollery Children's Hospital getting an NG tube put in to address his nutritional concerns; his neurologist heard we were there and came to visit. She broke the news that changed our lives forever. Benjamin has a rare neurological disorder called Ponti Cerebellar Hypoplasia Type 3 (PCH3). What this meant for Ben was a low life expectancy of eighteen months and not much hope for development. We were devastated and immediately took to the internet to "Google it" against the advice of our doctors. Ben is one of only five individuals (four living) to be officially diagnosed with PCH3. He is our little anomaly.
 
Now, at three and a half, Ben is thriving and generally healthy. He experiences global delay in most areas but is determined to overcome his own barriers. He is able to communicate using sounds, cries and the occasional word - most often calling for Dad. While he has extreme challenges, he is a willing participant in his day program and loves the time he spends with his Developmental Specialist provided by the GRIT program. The biggest obstacle and fear for us as his parents has been ensuring and feeling confident in the decisions we make for his future. Our goal is to determine what is best for him based on his reaction and comfort level in a given situation (and desperately hope we are able to read his signals accurately). We choose not to focus on his life expectancy and what he cannot do, instead living each day just as any other family would. We choose not to plan our lives around Benjamin but instead choose to plan ahead for him so he can be included the same way as his siblings.
 
Whether it is rough housing, watching Waybuloo over and over or spending time with his grandparents, each day with Ben is a great one. Both his sisters adore him and he brightens the lives of our family and friends with his infectious giggle and twinkling eyes. We feel very fortunate to have Benjamin as our son.


Story Written by Benjamin's mother Kristi Hall-Busque

Lindsay's Story

/
Images Captured by Sprout Photography 

Tiny Light Lindsay loves life. She meets all her challenges with resilience and strength. Her mom Naomi says, “She lives in the present and has no fear.” The things in life that bring Lindsay the most joy are amusement parks, Chucky Cheese and balloons.
Throughout the pregnancy, there were indications something was not right, but doctors dismissed them as nothing important. The prognosis following Lindsay’s birth left her family reeling. For the first years of her life, they were in survival mode, doing everything in their power to ensure their little daughter lived.
Lindsay has an undiagnosed genetic disorder that affects multiple areas of her body. She is considered palliative, which means doctors treat the symptoms and reduce her pain without eliminating the cause. Lindsay is hearing and visually impaired, and suffers from seizure and bowel disorders. On top of that, this young survivor battled kidney cancer at the age of 2, losing a kidney in the process. Lindsay has spent her life in and out of hospital.
For other parents who are facing the same challenges, the family offers these words of advice: “Don’t feel guilty for getting help to take care of your child, and make sure you remember to take care of yourself.” While they do not know what the future has in store for them, they are praying for one that is “pain and illness free.”  All they know for sure is that, with Lindsay, it will be filled with love and joy.
 
Story Written by Tara Anderson

William's Story

/
Images Captured By Christy Wells Photography
www.christywellsphotography.com


Meet Tiny Light Will – his mom believes that Will can see angels.

William was born a typical, healthy little boy but suffered from a Meningitis infection at only three days old which caused a great deal of damage to his brain.  His official diagnosis is Cerebral Palsy stemming from a brain injury; he also experiences bilateral hearing loss.  When he was just five days old, the doctors informed them of just how bad the damage was and warned them that Will would likely not make it much longer.  They were devastated.

But being the fighter he is, Will has overcome all odds set against him; he is a gift to his family and friends.  There are always fears that he will not be treated well or with the respect he deserves, but his family works hard at ensuring that only the best people are around him.  Will is out in the community every day, and they realize that they cannot control  what others think or do; they can only hope to help teach those who are willing to listen.

Will is technically on “palliative care,” but his mom jokes, “aren’t we all?”  He lights up the world around him by simply existing.  This four-year-old loves music and dancing, playing in water and watching his peers play around him.  He currently participates in a day program called G.R.I.T (Getting Ready for Inclusion Today) that assists him accomplishing specific personal goals.

His family wishes for him to be the best Will he can be and that his life is filled with support, happiness and joy.  They are excited to share pictures of Will so others can witness how brightly he shines.

Addison's Story

/
Images Captured By brand One Studios
 www.brand1studios.com


 Meet Tiny Light Addison. Though she is young, Addison already has an amazing spirit. She loves story time and her favorite book is Dr. Seuss's 'Oh The Places You'll Go'. This book was recommended by Addison's transplant surgeon, and her parents find it very appropriate for their sweet girl.

Addison was born a healthy baby. Her first three weeks were spent as a regular newborn. The day before she was three weeks things changed. Her skin became cool and pale, her lips had a blueish tint. She refused to nurse and her cry became a wail. Something wasn't right. Addison's parents immediately took her to the hospital. "In hindsight it was one of the best decisions we could have made and it was one of the many things that saved our daughter's life."

Addison's heart was failing. Within hours her parents were preparing themselves for the possibility of their three-week-old baby having a heart transplant. Addison's parents were hoping that her heart would start working as she was put on the top of the transplant list, Canada-wide. Less than two days later they got the call - there was a heart for Addison. Addison got her new heart, and second chance, on Mother's Day. The new heart didn't work right away, and she was put back on the heart-lung machine after the surgery. Next day everyone rejoiced. Addison had a pulse!

An examination of her old heart showed that she had a rare condition that is developed in utero called Non-Compaction Cardiomyopathy. Since her surgery, Addison has thrived. She is now doing very well, and her parents are enjoying every single moment with her to the fullest, as this experience has put into perspective how fragile life really is. Addison's parents have also found it difficult to think about the other family, willing to say yes in their darkest hour. "They have given us the ultimate gift. There is no way to thank them for that."

"We spent some time talking to a psychologist and bioethicist in the first few days of Addison's hospital stay. They both told us something that really stuck with is - 'Your child will tell you if he/she wants to keep fighting'. I thought this was a little far-fetched, especially in the case of a 3-week-old baby. How could a baby communicate something so complicated to us? Well, they were right." Children with heart transplants are living longer and better lives. While long-term prognosis is uncertain, Addison will continue to take anti-rejection medication for the rest of her life. While she has virtually no-immune system right now, Addison in many ways will lead a normal life, going to school, and travelling with her Mommy and Daddy!
Story by Angela Stephen-Dewhurst

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.

Orin's Story

/
Images Captured by Deanna Nilson Photography

 
You would never guess this cheerful and chubby Tiny Light has already undergone two open heart surgeries with another one still to come.  11-month old Orin loves to talk, bounce in his jolly jumper and watch his big brothers play.

Orin’s parents Julie and Steven found out halfway through the pregnancy their baby boy had a serious heart defect – hypoplastic left heart syndrome, or HLHS.  This means the left side of his heart didn’t develop properly and Orin is missing his left ventricle entirely.  He had his first surgery less than two days after he was born.

It was heart breaking for his family to watch Orin go through the ordeal without even being able to cuddle him.  But they found strength through their faith.  “The most amazing thing is the joy and peace in our family through everything.  Orin doesn’t look like a heart baby.”

Aside from one more open heart surgery in the future, this Tiny Light is expected to live a long and healthy life.  “We have the same fears all parents have when dealing with a threat to their child’s life.  But we have peace from God, a strong loving family, and a strong little boy.”


Written by Elaine Yong