Fox's Story

Images captured by Anna Jones Photography

Meet Tiny Light Fox. This little guy is happiest when listening to music or spending time in his bouncy chair. Though he is still so young, he has already demonstrated immense strength and bravery.

Twenty-two weeks into pregnancy, Fox’s parents were told that their son had a serious heart defect. He was diagnosed with transposition of the great vessels, DORV (double outlet right ventricle), coarctation of the aorta, VSD (ventricular septal defect) and an ASD (atrial septal defect). When he was born, the umbilical cord was wrapped around his neck twice and he was blue. He was immediately given treatment to stabilize him until doctors could fix his heart. At just five days old, Fox was scheduled for a four to six hour surgery but ended up in there for 11 hours. There were some major complications, but Fox continued to fight and he pulled through. Complications from the surgery included collapsed lungs, pneumonia, chylothorax, blood infection, pulmonary hypertension, pulmonary stenosis and arterial flutters. Fox was in the cardiac care unit for four and a half weeks but made it home just in time for Christmas.

Fox will face more surgeries in his future but his parents remain positive. As his mother says, “I'm so proud of my brave little man ... To see my son struggle and fight for his life has taught me a lot about what's worth fighting for. We don't know what the future holds for Fox but we know he will continue to fight.”

Story by Emily Harrison

Chloe's Story

Images Captured By Alana Couch Photography

Meet Tiny Light Chloe. This sweet girl was born in the Philippines and moved to Canada when she was just a few months old. Chloe is a very loving baby who brings immense joy to her parents. She enjoys listening to music, especially Twinkle Twinkle Little Star, and loves Dora the Explorer! Chloe is growing quickly…she is active and energetic and is just starting to walk and talk.

Chloe was born with Down syndrome and an atrioventricular septal defect (AVSD). When she was two months old, she underwent her first surgical procedure, a patent ductus arteriosus ligation. Two weeks after arriving in Canada, she had a bad cough and was taken to the emergency room. It was then that her parents found out she needed to go in for another urgent open heart surgery. It came as a complete shock because they were told by doctors in the Philippines that she would not require another surgery until she was two years old. In contrast, Canadian doctors provide this corrective surgery before six months of age.

These are challenging times for Chloe’s parents, as they are new to this country and are facing this situation alone. However, they are proud of their daughter and are hoping and praying for the best for her future.

Story by Emily Harrison

Tristan's Story

Images Captured by Squishy Prints

Meet Tiny Light Tristan.  This handsome 16-year-old is smart, funny, and courageous.  He is eager to learn and has developed a passion for cars, world history, and geography.  He enjoys classic rock music, and saw his first two live concerts this year.  Tristan likes to spend his free time reading, going out for dinner, and going to movies.  He has already travelled to ten different countries, and has even gone parasailing!

When Tristan was five years old, he was diagnosed with Duchenne Muscular Dystrophy.  Since then, he has slowly lost all ability to perform any function that requires muscle use.  He has already been through two major surgeries during which he demonstrated immense courage and never complained.  It has been extremely difficult for his family to watch him go from being able to do things independently to requiring full support.  This, of course, was hard for Tristan, too.  In his father’s words, “As he was
losing the ability to do certain things, his wonder became replaced with fear and it is hard for us all to continually go through the changes.”

With the help of care workers, Tristan’s family will continue to support him as he gets older.  He will be able to get a job that requires talking and possibly computers.  Recently, he has expressed an interest in broadcast journalism so his family is trying to set up some interviews for him to meet people currently working in the field.  Since his diagnosis, Tristan’s family has gone to great lengths to allow him to experience as much as possible.  His father says, “I just want him to live - really live - without
being scared all of the time. I want him to be proud of the great and amazing guy that he is.”

Story by Emily Harrison

Jake's Story

Images Captured by Naturally Beautiful Photography

Tiny Light Jake is always on the go, jumping on his trampoline and playing outside. This energetic boy is always smiling and enjoys playing with his cousins and friends. His favourite things include cars, trucks, trains, and animals.

In his first month, Jake had a large appetite, but was losing weight. His parents were concerned and took him to his family doctor, who quickly sent Jake to the hospital for testing. It was exactly one month after he was born that Jake was diagnosed with cystic fibrosis. His parents were shocked; they knew little about his condition and what it would mean for their son.

In the first year of his life, Jake was hospitalized three times. Now, he requires daily breathing treatments and many medications and supplements. Despite all this, he never complains. His parents are amazed at how well Jake has adapted to his treatment and how nothing seems to bother him. “Jake is so full of life. Everything about him inspires us. He’s a strong boy – a fighter! He has a great future ahead of him and he'll be able to accomplish anything he wants to in his life.”

Story by Emily Harrison

Charlie's Story

Image Captured by Light on Paper Photography

Tiny light Charlie loves to play with crinkly toys, roll around on the floor, and play in his jolly jumper.  He also loves to eat!  His smile is infectious and despite the challenges he has faced in the first few months of his life, Charlie has remained strong and happy.

The day after he was born, Charlie’s doctor noticed a heart murmur, and testing revealed a Ventricular septal defect, anAtrial septal defect, as well as Tetralogy of Fallot (TOF).  These heart defects resulted in Charlie going into congestive heart failure shortly after he was born.  Initially, his parents were told that he would require surgery at approximately six months of age.  However, after ten weeks he had barely gained two pounds, even though he was on high calorie formula and a feeding tube.  It was determined that he would need surgery earlier than expected.  At just 12 weeks, surgeons repaired his heart, and the surgery was a success!  He is still small but should develop into a healthy little boy.  He will require yearly visits to the doctor until he is five years old, but should not require any further surgeries.

Charlie’s parents have some advice for others facing similar journeys: “Although it is incredibly hard and you don't know what is going to happen, you have to stay strong, do your research and be prepared.  Ask questions and find others who are going through the same thing.  Join groups for support and stay positive.”

Story by Emily Harrison

Ryker's Story

Images Captured By Melissa Weicker Photography

Tiny Light Ryker is a fighter who has already overcome many obstacles in his life.  His struggles began sometime after his mother’s 20 week ultrasound.  He stopped receiving the nutrients that his growing body needed and had a stroke in utero without his parents’ (or doctor’s) knowledge.  His mother’s pregnancy and delivery went smoothly.  However, his parents started having some concerns when he was only a few weeks old.  He cried day and night for months, was not attempting to reach for toys, and his body appeared weak as he could not support his own head.

After visiting several doctors who assured them that nothing was wrong, they were referred to a pediatrician who ordered blood tests and an MRI.  While the blood tests came back normal, the MRI showed that Ryker is missing a significant amount of white brain matter covering the surface of his brain.  He also has two large, fluid-filled cysts in the center of his frontal lobe caused by a bleed in his brain.  Instead of forming scar tissue, his body reabsorbed the damaged tissue.  He was diagnosed with spastic quadriplegic cerebral palsy.

Ryker has had a few seizures, but has seems to have outgrown them and is otherwise healthy.  He can now pick up and play with toys and has learned to “commando crawl” - a move that his little brother appears to have taught him!  How much control Ryker will gain over his muscles in the future is unknown, but his parents are hopeful.  He has provided his family with so much joy and laughter, and in his mother’s words: “His smile will melt your heart, mine melts everyday!”

Story by Emily Harrison

Donovan's Story

Images Captured by Asher Images

Meet Tiny Light Donovan. He loves shaking his maracas and enjoys spending time in his therapy pool. His brother and sister talk to him, read to him, and play with him every day. He can’t communicate verbally, but expresses himself by clapping and humming.
In August 2010, Donovan was a healthy 8-year-old boy. In the following months, his health rapidly deteriorated. Donovan has severe brain damage and is now deaf, blind, and mute. He also averages 3-4 seizures a day and is fed with a GJ tube. In July of this year, Donovan’s family was told that he likely had Alper’s disease, a mitochondrial disease that consists of seizures, blindness, deafness, liver damage, and eventual death. However, a month later when Donovan was retested, the tests came back negative and he currently has no diagnosis. He has been tested for viral, bacterial, autoimmune, mitochondrial, environmental, and genetic diseases; however, doctors have yet to find out what caused his health to deteriorate.
His mother’s attitude remains positive. Her message to other parents is to “look at the strength your child has, take that strength, and go with it.  Wake up each day and tell yourself it's a new day and, good or bad, your child made it another day.” Donovan still has challenges ahead but as his mother says, “he is a miracle and I believe he will fight as hard as he possibly can.”

Story by Emily Harrison

Jonathon's Story

Images captured by Baotran Pham Photography

Born in May of this year, Tiny Light Jonathon has already amazed his family with his strength. Jonathon “talks” up a storm and smiles at everyone he sees. This sweet little boy also loves to cuddle and listen to his father read him stories.

Jonathon was born prematurely at 31 weeks and spent the first part of his life in the hospital with a CPAP machine to help him breathe and a NG tube for feeding. The hardest part for his parents was leaving him in the hospital when they went home. Even though they knew there wasn’t much they could do for him, they felt as if they were abandoning him each time they left.

Jonathon failed his car seat test in June and the day he was supposed to retake the test, a nurse found an inguinal hernia. He passed the car seat test but was kept in the hospital until he could receive surgery. It turned out he had two hernias, which were quickly repaired, and Jonathon finally arrived home on July 5th.

This little guy has grown very quickly! At his seven month check up, the pediatrician said that Jonathon could be measured based on his birth date, rather than on his due date. This was a surprise, as most premature babies are measured based on their adjusted age until their second birthday. Jonathon is now at the 50th percentile for height and weight when compared to other babies born full term on the same day he was. He is eating baby food and is almost able to sit up on his own. At this point, he does not seem to be delayed in any areas. His parents feel very blessed to have brought this little miracle into the world.

Story by Emily Harrison 

Wilson's Story

Images Captured by Sassy Photoz

Meet Tiny Light Wilson. This four year old enjoys a wide variety of activities including swimming, baseball, playing “doctor” and “store”, and jumping on his trampoline. He also loves anything involving music. 

When Wilson was only 2 days old, his parents were told that he had Hirschsprung's disease. His parents felt overwhelmed and didn’t know what this meant for their son. Due to missing ganglion cells in the bottom part of his bowel, Wilson must wear pull-ups and requires irrigations. It is very hard for his mother to watch other kids ask Wilson why he is still in pull-ups, though Wilson himself demonstrates an understanding of his condition and rarely complains. Wilson also has a speech delay. He works very hard to help people understand what he is trying to say.   

Wilson’s mom fears that he will be teased at school and that he may never gain control of his bowels. Though the future is unknown, this family remains hopeful. “Take it one day at a time and follow your gut.” 

Story by Emily Harrison

Sean's Story

Images Captured by Studio 1948

Meet Tiny Light Sean. This 14 year old boy loves video games and playing his electric bass guitar. He knows a lot about cars, is very good with computers, and is a talented artist. His mother also describes him as very mature for his age, as he grew up surrounded by mainly adults (doctors, counselors, and family members). Though he sometimes comes off as a tough guy, he has a heart of gold and will do anything for those he loves.

Sean was born with Congenital Heart Disease (multi-branch pulmonary artery stenosis) and low blood sugar levels. Shortly after his birth, he also developed acid reflux disorder, asthma, bronchitis, and allergies. When Sean started school, his mother noticed that he was having difficulties. Testing showed a learning disability for comprehension and processing. On top of all this, Sean also developed anxiety and depression following two heart surgeries last year, which left him with an aneurism in his chest.

Sean’s mother worries about her son’s health and the fact that he is bullied; however, she is inspired by Sean’s strength and remains positive. “The most amazing thing about all that has happened is that Sean is here, and he has never given up. He is a true fighter and I love him with all my heart and soul.”

Story by Emily Harrison