Kamryn's Story

Images Captured By D4 Photography

This sweet Tiny Light is Kamryn.  She is an inspiration to so many people around her, both those who know her and those who do not, because of her strong spirit and determination to not let anything stop her from doing the things she wants to do.

Kamryn was originally hospitalized for RSV and acute bronchiolitis.  However, during the course of her illness, she contracted Group A Strep and Bacterial Pneumonia.  She was flown to another hospital and she was placed on life support because she was in Septic Shock.  The wait to find out if she would live was agonizing for her parents.  When she finally stabilized, Kamryn showed a zest for life and a happiness that has been amazing!

After her battle with severe infections, Kamryn does not look the same as other children.  She has a total of two and a half fingers.  She has lost part of both her legs including a significant amount on her right side.  However, these things do not get Kamryn down. She can pick up things, hold her own bottle, and even crawl around.  She loves to dance, play with dolls, and keep up with her brothers.

Kamryn’s parents feel that it is important to stay positive and keep looking forward rather than spending time wallowing in what might have been.  Their goals are to encourage Kamryn in everything she desires as she grows.  They want her to do all the things that other kids do.  They want her to continue to be the strong, inspiring, and beautiful light that she already is in this world as she conquers all of the challenges that come her way!

Story by Shauna Salmon

Nathan's Story

Images Captured by Studio 9 Photographics

Meet Nathan. This Tiny Light loves his toys and is always laughing and smiling. Nathan was born with Trisomy 17, a rare genetic disorder.

Nathan has an aunt with the same condition, but his family is still unsure what to expect, as Trisomy 17 can mean very different things from person to person. His condition was not detected until a late ultrasound, between 34 and 36 weeks.  

Nathan has hydrocephalus, a build-up of fluid around the brain, which results in brain swelling. Surgery was performed to put a shunt in when he was only 20 days old, but the shunt stopped working so a second surgery had to be done only three months later. These are just two of the several surgeries Nathan has already had. He is expected to need 14–16 surgeries before he is two. Right now his shunt is again not working, which means he’ll need another surgery soon.  

While Nathan’s mom was upset that nothing had been detected at her 20-week ultrasound, she wouldn’t change a thing. “He’s an amazing little guy!” She hopes that having a sister with the same condition with prepare her for how life will be for Nathan. More than anything she just hopes that he will stay a happy, strong and loving boy!

Story by Angela Stephen-Dewhurst

Elizabeth's Story

          

Images Captured by Dawn Melanson Photography

Mother to four healthy boys, it came as a huge shock to Elizabeth’s parents when their daughter was diagnosed with congenital heart disease.  Fear replaced anticipation as Elizabeth’s mom spent the next four months wondering if every kick she felt might be the last.

When Elizabeth was just three days old, her parents helplessly gave her away to a surgeon who initiated the process of “fixing her heart.”  It is hard to imagine the pain of giving birth, only to have your child immediately taken away and put on drugs in preparation for life threatening surgery.  She was just minutes old and already fighting to live.  It is sheer agony, waiting when you should be holding, fearing when you should be ecstatic.  One of the most difficult things they have had to endure was sitting beside Elizabeth’s bedside, watching her fight to live after her first surgery.  After enduring a total of 56 days in the hospital, they were finally able to bring her home.

At just a teeny six pounds, she overcame 21 medication pumps, five IV's at a time, and an arrhythmia that made her heart beat at 240 for three hours.  Despite all the challenges she has faced, she is happy and thriving.  “She's so happy and strong willed.  We know that if she can get through that, we can get through anything.”  Elizabeth “likes to jump in her exersaucer, have tea parties with her brother, watch her brothers play, sit on the floor while playing with her toys, and be carried around by her daddy.”

She has taught her mom about the fragility of life and how to truly savour each moment with the ones you love.  Instead of focusing on the scary things, they chose to focus on Elizabeth.  “There are so many things that could go wrong with her … if I sat and thought about them, I wouldn't be able to enjoy her.”

“The road is long and hard, but worth it when you see them smile at you and begin to babble.   You can learn a lot from your braveheart, and a lot about yourself in the process.” 

Story by Tara Anderson

Meet Abigail

 Images Captured by Vanessa Balenovich Photography

This Tiny Light loves anything athletic. Her mom is sure that when her treatment is done and she is feeling better she will be right back into soccer and dance!

Abbye has acute lymphoblastic leukemia. This diagnosis was made at when she was three, on Christmas Eve 2010. Her mother’s first reaction was numbness. She remembers being told that her baby was sick and that they were going to make her better. Her focus became making Abbye comfortable as much as it did making her better.

A child life specialist helped her family to explain to Abbye that she was sick and that she would have to take medicine until she was six. This innocent and sweet little lady’s immediate assumption and fear was that she had had too much chocolate milk. Abbye’s independence has diminished. She stopped walking after a lumbar puncture in January. Other things she can’t do because of the PICC line.

Though there are frustrating times for Abbye (resulting in major fits), she has for the most part handled thing in a way that amazes everyone around her. Though she is only four, she has a desire to be involved with her treatments. Despite the chemo and many medications, Abbye still wakes up most days wanting to play.

Abbye’s mom admits that some days it’s nice to just curl up and watch movies in bed with her little girl. She stresses the importance of taking advantage of the days that sick children do have their energy! She looks forward to the time when this part of their family’s life is behind them, and Abbye can enjoy life to the very fullest. While she fears things taking a turn for the worse, she is constantly inspired by Abbye’s personality and strong will. "Whenever I see her I know that I need to be strong, because if I’m not strong for her then everything might just fall apart."

Story by Angela Stephen Dewhurst

Mikaela's Story

Images Captured by Michelle Wells Photography

Meet Mikaela. This Tiny Light is happy doing regular newborn stuff! As long as she is eating she is happy!
Mikaela was born 13 weeks premature. She was one of two co-existing twins in a molar pregnancy. The egg had split into what would have been identical twins, but one didn’t develop. Mikaela did. Because there have only been 300 documented cases of this scenario since 1954, the doctors were unsure how to care for them. After putting up a huge fight, Mikaela’s mother convinced the doctors to let her continue with the pregnancy.


It was found out after Mikaela could not be weaned from oxygen, that she had BPD, a chronic lung disease that affects newborn babies. She will continue to have follow-up appointments every two weeks for this condition. She also has follow-ups for her ROP (retinopathy of prematurity).  She has passed three tests so far!


The most difficult part of this journey for Mikaela’s mom, aside from the health problems that Mikaela has been challenged with, is only getting to see her other daughters on weekends. While it was necessary for her to be with Mikaela, she longed for her other children.


Mikaela has doubled her birth weight, an amazing thing for everyone around her to see. She has also learned how to nurse and come off of CPAP (continuous positive airway pressure). Mikaela continues to progress so much, making every day amazing and spectacular. Mikaela started fighting long before she was even born to live. “The road is long but worth every second. Thinking about the past few months brings tears of joy!” 


Story by Angela Stephen-Dewhurst

Mason's Story

Images captured by Donna Larmour Photography

Mason is a Tiny Light that couldn’t wait to shine.  He was born early at only 33 weeks gestation, but was healthy. He weighed 6lbs 12oz and the doctors were unsure of why he came so early.  It was only 4 days later a clot was discovered in his kidney after his noticed his blood pressure was rising to dangerous levels.  Mason was transferred to the Childrens Hospital of Eastern Ontario (CHEO). At 5 days old during a precautionary ultrasound before starting him on blood thinners, a grade 4 brain hemorrhage was discovered.  Instantly his parents were faced with the fear of the unknown.  Mason was in serious danger of being physically damaged for the rest of his life, being confined to a wheelchair or being in and out of hospitals for his whole life.  The hardest part was that he had two opposite conditions, because of the brain bleed they couldn’t treat his kidneys and his parents were forced to sit and wait and worry about their future.


It was unbearable for Mason’s mom as she sat and feared the worse. A nurse came over to her and told her that she was going to get through this and that what she could do for was to love him, because she was his mother and “no one could love him like she could”. She will never forget that. It made her realize not to take life for granted and to enjoy the little things.  The most amazing thing was watching her baby boy smile throughout it all. Despite everything, all the needles, surgeries and medications they could always see him smile in his sleep.  Most people look at him and have no idea what he's been through. He looks so normal and happy that they have no clue he had it so rough until they see the shunt on the back of his head.  The shunt was necessary due to the hydrocephalus he developed because of the brain bleed. He is an amazingly easy baby and at 6 months he sleeps through the night and only cries when he is hungry or sleepy.  His parents still have many follow ups at CHEO.  He is on blood pressure medication for a little while longer and he will always need to monitor his head to make sure the shunt is still working.  They won’t know for awhile what effect the brain bleed has had on him but the worse case scenario was that he would not be able to work the right side of his body.  Already his parents know this isn’t the case.  He can definitely move all his body and only has a slight dysfunction in his right arm which is steadily improving.  Even though they still worry that he might have some cognitive damages to his brain they are hoping for the best and trying not to live in fear.  As he develops, they may discover more but they are confident that they can handle whatever it is because he is already doing way better than they ever expected. 


Story by Sue Renaud

Meet Mark and his family

Images Captured By Red Button Photography

This handsome young man is Mark.  Mark loves to watch movies and play his Nintendo Wii.  He is a very friendly boy who loves to socialize with people.  He has two brothers who love him dearly, as he loves them.

Mark was about four months old when his mother noticed his eyes starting to flicked just like his brother James' had.  Both Mark and his brother have a condition called Hereditary Cerebellar Ataxia.  It is a nervous disorder that makes them unable to coordinate voluntary muscle movements, among other things.  Mark's parents were very shocked and angry when they found out about their children’s diagnoses; no parent is ever prepared to hear that their child is ill.  It was a very tough year for them, to say the least.

Mark and his brother both noticed something was different when they were not able to walk like other kids.  It was very tough on everyone involved when they learned that both boys would never be able to walk.  Even though they are developing years behind their peers, they are proud of the accomplishments that they have made, and their parents are proud of all three of their boys.  Mark was very proud of himself when he just recently learned to tie his own shoes.  They have learned that if there is something that they cannot master on the first try, they will try, try, and try again.  Mark and James will eventually be living in a group home, as their parents will no longer be able to physically care for them as they grow into adults.

Their mother's advice is this: to take care of yourself and your marriage because you are no good anyone if you are physically and emotionally drained.  Pray, pray and then pray some more.  She wants her boys to live a happy life and to be loved for who they are.

Story written by Billie Depatie 

Denver and Dawson's Stories

Images Captured by Phorever Photography

This is Dawson.  A go-getter who is busy from the time he wakes up in the morning, until the time he goes to bed. He loves playing with trucks, trains and horses, and although he's been through so much in his young age, you would never know it by seeing him play. 


Dawson's parents found out at 25 weeks of pregnancy that he would have heart problems. He was born with a coarctation (narrowing) of the aorta, and a hole in his heart. His parents thought he'd already been through enough, but while he was still recovering in the hospital from heart surgery, at the age of three weeks, his screening results came back positive for cystic fibrosis. 


Today, Dawson takes up to 15 pills a day just to be able to digest his food, and while the hole in his heart may never close and he may require heart surgery in the future, his heart is doing well. With the medical advancements of cystic fibrosis patients, the median age of survival has recently been increased by 10 years, from 38 to 48 years of age. This gives his family hope that he will stay healthy long enough for a cure to be found. 


The advice Dawson's parents give to other families is to always look for the small comforts in life—there will be signs of hope where you least expect them. They say that reaching out to others has been invaluable, and by seeking out other families facing the same struggles will help you get through the day-to-day challenges. Dawson and his family have found strength within each other, and hope that he will grow to be a happy and healthy young man who follows his dreams. 


Story by Jag Nagra



Meet Denver, a brave young man who loves to play with cars and trucks, chase his dog around the house, and wrestle with his brother. Denver's parents found out 35 weeks into pregnancy, that he had a malformation of the brain called hemimegalencephaly. He was delivered by C-section 37 weeks into pregnancy, only one year after his older brother had undergone heart surgery and was diagnosed with cystic fibrosis. 


Since one side of Denver's brain was developing abnormally, and was larger than the other half, a radical 8-hour brain surgery was performed to help control his seizures, and he was given a shunt to relieve the excess pressure inside his skull. Before his two surgeries, Denver was having up to 100 seizures a day. He is now on three anticonvulsant medications, but still having seizures. 


Denver is surrounded by a tremendous amount of support from his siblings and family. His team of doctors has been amazing, and his aide is a godsend who he loves very much. Thanks to support groups online, his mom has met a number of other mothers in the same situation, and the support they give each other is amazing. Knowing that so many people from around the world are praying for him is uplifting to say the least. 


While technically Denver only has half of his brain, he works hard to learn new things. He's learning how to sit and stand, learning sign language, and understands much of what is said to him. His parents hope that one day, he will be able to walk, talk, be semi-independent and live a seizure-free life. They hope he will be accepted by others for exactly who he is. Denver's family believes he's a miracle. Only 4 to 10 babies worldwide are born with his condition each year, and some of them don't survive infancy. With numbers like that, who could argue that he truly is a miracle? 


Story by Jag Nagra

Skylar's Story

Images Captured By Stephanie Fieldberg Photography

This is Tiny Light Skylar.  Skylar loves to watch The Gummy Bears. He could jump all day long. He loves watching the cows outside and rolling around giggling, making sounds like the goats.
Skylar was born one month early with a unilateral right cleft lip and palate, which was detected during an early ultrasound. His parents were initially devastated, but they reminded themselves that it was a fixable diagnosis.


Throughout his lip and nose surgery, Skylar remained strong. As heartbreaking as it was for his parents to hand their baby over to a team of doctors for surgery, the rewards have been amazing! His NAM fitting was hard. Skylar’s smiles turned to tears, as the NAM had to be worked on, being changed and washed several times a day.


The journey has been up and down but Skylar remains happy. His parents are proud of their strong boy as they look back at his progress. “He is an inspiration to us, because despite all he has been through, he seems to always have laughter and joy.”


Story by Angela Stephen-Dewhurst

Meet Alex

Images Captured by Leanne Liakos Photography

Meet Tiny Light Alex.  Alex
loves driving around with his Dad listening to “cool” music.  He also loves
to sing.  Several music teachers have told Alex's parents that he has
perfect pitch!

Alex was diagnosed with severe Autism at two-and-a-half years old.
His Mom had suspected that something was not quite right from the time Alex was
16 months old.  Alex had a few words that he spoke on occasion; he then
stopped responding to his name.  When his Mom noticed that he was no longer
reacting to his family members, she began researching.  Despite the fact
that her research kept coming to the word Autism, Alex's diagnosis
still came as
a shock.  They were devastated.  Because of the wait to see a
developmental pediatrician, they had lost a whole year.  "A whole year of
lost time when all of the 'experts' tell you how imperative early invention is.
Gone."  Alex's father was in shock and denial, hoping it was a misdiagnosis
and that they would find it to be something less debilitating.  This was a
period of transition for Alex's Mom.  She was armed with a year’s worth of
research, she was grieving, but now they had an official diagnosis,
meaning that
Alex could now get funding and could start therapy.

Alex can now do many of the things that they were once told he would
possibly never do.  He has loving relationships, he laughs at funny things,
feels remorse and last year even said 'I love you Mommy', unprompted.  He
had learned how to use a computer, and is great at using an IPhone and other
touch screens.

Things are still difficult for this family.  Alex is prone to
meltdowns, and often needs to be carried away when this happens.  He can be
very impulsive, making restaurants tricky; Alex will often get up and start
eating food off of other tables.  His parents live in fear that he will
leave the house and get lost.  In a way this journey has been hardest on
Alex's Dad who dreamed of teaching his son life experiences and playing sports
together.  "Even though there are special little moments and milestones
here and there, everyday you live with and look at your beautiful child, whom
you had all of these wonderful plans for, and everyday you are reminded of what
could have been and may never be for him."

There are many therapies out there.  Alex's parents want to stress the
following to parents who have kids with Autism: you have to remember that what
the experts say to do isn't always the right thing for your child.  You are
your child's best advocate.  Alex's parents hope that Alex will be able to
fully communicate one day and that he will be able to work to decrease his
frustration.  "We hope that he will have meaningful friendships and that he
will have lots of people in his life who are true friends.  I hope he is
able to love and be loved.  I just want him to be happy."

Story by Angela Stephen-Dewhurst