Jayden's Story

Images Captured by Caity McCulloch Photography

Here is Tiny Light Jayden.  He is the best snuggler ever! Jayden loves playing and listening to music, swinging on his swing-set, building with his blocks and going swimming.  His mom admires his happy, loving personality and is unsure how he manages to keep a smile on his face considering the challenges he has to overcome daily.  Jayden is her inspiration.

Jayden was born on March 31, 2010; his parents already aware that he had Down Syndrome after an ultrasound showed indications of soft markers.  A visit to a specialist and further testing confirmed the diagnosis, so mom did what she could to be prepared and began researching everything possible on the disorder.  When Jayden made his arrival, the family received some great news discovering that he did not have the common heart issues associated with Down Syndrome.

However, four days later, when Jayden still had not had a bowel movement, things took a turn for the worse.  The family was sent to Victoria General Hospital where they remained for three weeks as Jayden had further been diagnosed with Hirschsprung’s Disease.  In Hirschsprung’s Disease, the nerves from part of the bowel are missing which means material cannot be pushed through, resulting in blockage.   In August of 2010, Jayden had surgery removing one a half feet of his colon and since then, has been thriving and doing well but still continues to experience discomfort when he needs to have a bowl movement.

While the hardest thing about their journey has been watching Jayden go through so much pain, the most amazing part is how much his parents have learned about themselves.  They now view children with special needs in an entirely different light and feel their child is no different than any other child.  Jayden has taught them a great deal about life; about being patient and ensuring that you do not lose yourself as a parent a long the way.  When mom is having a rough day, she looks at Jayden’s beautiful blue eyes and big smile, and cannot help but to smile herself.

For the future, his family hope Jayden will find independence, potentially find employment and continue to be as accepted and loved as he is now.

Story by Kristi Hall-Busque

Ryder's Story

Images by Megan Stewart Photography

This Tiny Light is Ryder.  Ryder loves to roll around on the ground, play with his toys, and swim in warm pools.  Ryder also loves to listen to music and watch his favourite cartoons.  Ryder amazes his parents with his determination and ability to never give up.  Ryder has Spastic Diplegia Cerebral Palsy.


Spastic Diplegia is a form Cerebral Palsy that affects the muscles of the lower extremities and is caused by damage to the brain.  Ryder’s brain damage most likely occurred while he was in the womb when he experienced trauma from Twin to Twin Transfusion Syndrome (TTTS).   TTTS occurs when a set of twins share a single placenta and there is an uneven blood flow between the two babies.  One twin receives a lot of blood while the other receives too little.  Left untreated, 70-100% of these babies will succumb to the trauma. Wyatt, Ryder’s twin brother and a Tiny Light with wings, sadly passed away on day 24 of his short life.  Without Wyatt, Ryder would not be here today.


Ryder’s parents hope that he will never lose his determination, and that he will continue to fight and prove people wrong when they say he cannot do something.  They want to tell other parents of children with special needs that it can be hard at times with all the limitations your child has, but you need to focus on what they can do rather than what they cannot.  


Ryder’s parents’ biggest fear is that he will not be able to walk, but they feel in their hearts that he will walk someday.  However, if he does not, it is not the end of the world because he is here, he is happy, and that is all that matters.  It is always heart-warming knowing a child who can bring smiles to the faces of anyone and everyone he meets!


Story by Anna Terebka

Matteo's Story

Images Captured By Tricia Marie Photography

www.TriciaMariePhotography.ca

This bright-eyed little guy is Matteo. He loves to play with his mom and dad. Making them laugh and smile makes him happy. He might travel the world one day, as he loves to go places with his parents already. He, like so many other children, also loves to dance. Matteo is a strong-willed, adventurous little man, who is full of life.

Matteo was diagnosed with dilated kidneys at 38.5 weeks gestation. His parents were overwhelmed and confused, and also felt a bit guilty. They were unsure of what this meant for their baby boy, who had yet to enter this world. They followed their gut instinct and refused to give up asking questions until they were satisfied with the answers.

The possibilities are endless, as Matteo surprises his parents each day with what he has accomplished and how far he has come. They want what every parent wants, to see their child grow up, and be a successful and happy adult. Where success means doing the best they can with what they have. Success is in the doing, not the getting — in the trying, not the triumph.

“Matteo is truly a gift from God. he has taught us so much in such a short period of time. He shows us how important time really is in life as it is one thing in life that you cannot get back or do over. Matteo is our Tiny Light, who can brighten up an entire room when he enters.”

Julian's Story

Images Captured by Photography by Eiko

This is Julian.  Isn't he adorable?  Let us tell you a little bit about this boy.  He loves music and, of course, the best part of music – dancing!  If Julian catches a glimpse of a puppy dog, he is instantly in love.  He also surprised his mom in the delivery room.  His mother had been told that he was to be a girl, so she was shocked when it was announced that he was a bouncing baby boy!  He almost went home in pink!



When Julian was seven days old, he went into heart failure due to cardiomyopathy.  Basically, the left side of his heart was so enlarged that it was no longer pumping the oxygenated blood to the rest of his body efficiently.  This resulted in him needing a new heart.  At three weeks old, he underwent open heart surgery to put in the canals (tubing that is inserted into the heart and secured to the chest wall) that would exit his body through his abdomen and attach to the most amazing machine his mother had ever seen: The Berlin Heart.  This allowed him to be less sedated.  As a result of the trauma his body went through, he suffered a stroke on the left side of his brain which effects the right side of his body.  It was now time to wait for a new heart. 



On January 17th, 2009, his family was told that Julian would be going into a ten hour surgery for his heart transplant.  Obviously, his mother was devastated when she first found out that her baby was sick, but with the help of her family, she pulled herself together.  She had to be strong for her baby boy.  She was by his side every moment, along with her family.  She believes that this is what kept Julian fighting, the love he felt when his family members did not leave his side in the hospital.  Finally, at four months old, her son left the hospital to go home with his mother. 



His mother believes that everything happens for a reason, and although it is a struggle, Julian has brought so much to her life.  He makes her a better person.  She loves to watch him smile, laugh and play.  Julian is now developing and growing like any other 18 month old.  He recently started walking; what a proud moment for both of them!  He has a drive to be independent like no other.



Julian will likely need another transplant in twenty or so years, but they will deal with that when that day comes.  For now, they are living life to the fullest – living, laughing and loving.



Story by Billie Depatie

Ethan's Story

Images Captured by Brooks Photographic

Ethan is a Tiny Light who loves trivia; did you know there are six different types of bacteria living under your arm?  Ethan knows!  He also loves James Bond, Tae Kwon Do, and collecting things – he will collect almost anything.  Ethan’s mom loves to hear him sing, and says that it does not matter if he is in tune or keeping time; he has a way of making it sound perfect. 

Ethan’s diagnoses include ADHD, Non-verbal Learning Disorder, Generalized Anxiety Disorder, Obsessive Compulsive Disorder, and Borderline Cognitive Functioning.  Although it seems a lot to deal with, Ethan’s parents were actually relieved to finally get the diagnoses.  Having something concrete to go on not only gave them comfort that they were not “crazy” for thinking something was wrong but also a jumping off point for dealing with all the challenges that Ethan faces. 

While he faces many challenges, Ethan also has many strengths.  He is kind and generous.  He sees the world with a child’s sense of innocence.  He is unbiased and honest.  He loves with his whole being, holding nothing back, and he has a quiet strength and resilience that amazes people around him.

Like most parents, Ethan’s parents hope that he will grow up happy and healthy.  While things seem difficult sometimes, they have faith that they will be able to get through it all.  They want him to find joy in simple things and know the unconditional love of family.  Ethan makes the world a better place and his family count themselves lucky to be a part of his world. 

Story by Shauna Salmon

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

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

Connor's Story

Images Captured by Kimberly Rashed Photography

This is Tiny Light Connor. He has a very easygoing and has a happy disposition. He loves riding bikes, acting, and video games.


Connor was born three months premature. He weighed only 1 lb 3 oz. He was fed by feeding tube at birth and was on oxygen, which he would not have survived without. Connor was in the hospital for six months before he finally got to go home.


Connor has had struggles due to premature birth. He has chronic lung disease as well as hearing loss for which he still wears a hearing aid. He has three learning disabilities: dysgraphia, global delay, and a non-verbal diagnosis. This has made school a major struggle for Connor.


Though things have been tough, Connor maintains an amazing attitude. He is a charming and very likeable boy. He has applied for mechanics at high school, as he wants to follow in the footsteps of his dad and grandfathers. His mother’s wish is for Connor to be the very best he can be. She also hopes that he will be socially accepted and takes comfort in knowing that he has nice peers that are understanding of him.  


Story by Angela Stephen-Dewhurst