Mariyah's Story

Images Captured By Aspectus Photography

www.aspectusphoto.com

Tiny Light Mariyah has been defying the odds from even before she was born. Now, nothing can slow down this curious one-year-old who tries so hard at everything and smiles through all of it.

When mom Shama started having contractions at 23 weeks gestation, doctors said the baby’s chance of surviving the delivery was only 2%. Mariyah weighed just 507 grams at birth, and was immediately rushed off to the NICU. She survived but faced several life-threatening battles over the first six months of her life. This preemie suffered a brain bleed, bleeding in her cerebellum, she had heart surgery to close a duct (PDA), stomach surgery to remove adhesions from necrotizing enterocolitis, numerous bouts of infection, chronic lung disease, and one scare of meningitis. Through it all, Mariyah remained a feisty little baby, always kicking, grabbing and pulling at her wires and tubes.

Though parents Shama and Irshaad were told their baby girl would likely be

severely disabled because of the brain bleed, Mariyah continues to develop right on track for her adjusted age. The left side of her body is weaker, but that doesn’t stop this princess from getting what she wants. She is pulling to stand and walks with help. By her next birthday, she should be like any other two-year-old.

This Tiny Light never gives up. Even in the darkest days when everyone thought

she would not make it, she kept fighting. “In one year, Mariyah has been through

more than my husband and I have been through in our entire lifetime. She has given everyone who knows her a reason to believe, and provides us with a daily reminder of how fortunate we are in life.”

Written by Elaine Yong

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

Aiden's story

Images Captured By Amber Light photo and design

http://www.amberlightphoto.com/

Four year old Aidan is a happy little boy who finds joy in even the simplest things in life. This Tiny Light is known for his genuine laughter, which is rather contagious. He loves dancing to music, playing with his iPad, and going on nature walks. Aidan also has an incredible sense of direction and an amazing memory for places he's been before.

After Aidan was born, he developed more slowly than other kids his age, but still managed to reach all expected milestones. Then, at age two, his parents Christine and Spencer noticed his speech was regressing. It eventually disappeared altogether and Aidan lost interest in his surroundings and other people. Following several examinations, Aidan was diagnosed with autism.

Over the past two years Aidan has started making verbalizations and can now use pictures to communicate. Still, he has motor issues and sensory deficits, which have resulted in him eating just 10 items. With continued therapy, his parents are hopeful that Aidan will continue to make progress.

In September, this Tiny Light will begin classes at a special needs kindergarten - an important milestone for Aidan and his loved ones, who have grown closer during the challenges of the past four years. As Aidan's mother Christine notes, her son has taught them what's important in life and to live in the moment.
written by Catherine Urquhart

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

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