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

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

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

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

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

Andrew & Matthew's Story

Images Captured by Anna Jones Photography

www.annajones.ca

These Tiny Light twins may face challenges, but they never complain and wish their lives were any different.  Andrew has atypical autism and moderate/severe spastic cerebral palsy, requiring a wheelchair for most of his day-to-day activities.  Matthew has ADD and mild cerebral palsy, which affects his motor skills.

Their parents knew the twins would have some form of disability before they were born.  Andrew was officially diagnosed at 6 months, Matthew at 3 years of age.  “We were in one way thrilled the twins had survived to delivery and made it home from the NICU, but we knew that life would be challenging as the parents of twins – and twins with special needs.”

The 12-year old brothers are great working together, but they have very different aspirations.  Andrew wants to be a DJ.  Matthew dreams of being a pilot.

This family has faced many ups and downs, yet there is so much to look forward to with these Tiny Lights.  “The slower pace does allow you to truly enjoy the moment that might otherwise pass you by.”

Written by Elaine Yong

Colton's Story

Images Captured By Jag Nagra
www.turntopage84.com

You would never know by looking at him, but Tiny Light Colton is a stroke survivor.  It certainly hasn’t slowed him down – this sweet soul with a heart of gold wows other children with his BMX moves, and has won many trophies and ribbons competing in Quarter Midget racing.

Within hours of Colton’s birth, parents Wil and Shelley were told that their little boy was gravely ill.  He had an extremely low platelet count and needed many transfusions to stabilize his condition and stop the bleeding.  Doctors diagnosed him with a rare blood disorder called neonatal alloimmune thrombocytopenia (NAIT).  NAIT causes the mother’s immune system to build antibodies that attack the fetus’s platelets, often leading to spontaneous bleeds in the brain and other organs.  As a result, Colton suffered a massive stroke on his second day of life.  “He was the biggest baby in the Special Care Nursery at the time, as well as the sickest. It was heart-breaking.”

Colton’s little sister, Payten-Raye, also had NAIT.  She was diagnosed in utero and through extensive medical intervention before and after she was born, she did not suffer any brain bleeds.

Now, Colton is like a typical almost-nine-year-old little boy.  He loves spending time outdoors with his friends.  While he is at high risk for seizures and has some difficulties with speech, he enjoys going to school and learning new things.  This Tiny Light also had big dreams – he wants to be a firefighter.  The family has learned not to take anything for granted and enjoys every moment spent together. “I have all the hope in the world.  I hope that Colton gets the chance to do and become whatever he wants to in life.  I hope that nothing holds him back.”
 
Written by Elaine Yong