Lukas' Story

Images Captured by Liz Bradley of elizabeth&jane photography 

Meet Tiny Light Lukas. This Tiny Light loves playing with his cars, watching the movie Cars and playing with his puppy. He really enjoys dancing and singing along with his favorite TV shows and country music.

Lukas was born with Tetralogy of Fallot, a congenital heart defect. He was diagnosed at just one week old. When Lukas was born he had a heart murmur that was loud enough for the doctors and nurses to hear with just a stethoscope. Lukas had a very large hole in the walls between the right and left ventricles of his heart. Fortunately, Lukas has only needed one surgery to date, when he was six months old. Lukas’ recovery was remarkable and just six days after the surgery he was able to go home with no medication except Advil for pain, which he didn’t even really need!

“We were terrified,” Lukas’ mom says. “Without surgery, Tetralogy can be fatal. Even with surgery there were no guarantees.” Lukas didn’t walk until he was 23 months old and has had some other developmental delays. Even though Lukas cannot carry on a conversation like an average child his age, he can answer questions and has learned so much. He can identify all his shapes, colours, numbers and letters, and is even spelling some words now. 

His parents’ biggest fear is that Lukas will need to undergo more surgeries and possibly be diagnosed with Autism Spectrum Disorder, which his older brother has been diagnosed with. However, his family hopes that “Lukas will get to live his dreams and make them a reality. Now that his heart is fixed he could do anything that a normal kid could do.” 

Story Written by Kelsey Walker

Dustin's Story

Memories Captured by Stephanie Fieldberg Photography  

Meet Tiny Light Dustin. Dustin loves to cuddle, play outside, help his Daddy on the farm, ride his horse “Buddy,” and play with his two older brothers and younger sister. This Tiny Light’s journey will not be easy, but his family is determined to take it one day at a time and never give up hope.

Dustin was born May 5, 2006, and shortly after his difficult journey began. When Dustin was only two days old, his parents, Andrelei and Bert, brought him to Emergency due to bloating and vomiting. He was transferred to the Neonatal Intensive Care Unit, where he spent three weeks before being discharged with no explanation. At the age of six months, when Dustin was introduced to solid foods, he became very constipated and then at the age of one year he was hospitalized again and diagnosed with “failure to thrive.” At this time Dustin was given NG tube feeds for 10 months but his weight continued to drop and his health continued to deteriorate. Finally, on December 22, 2007 when Dustin was 19 months old his family was given a new diagnosis, Hirschsprung’s disease, and an emergency colostomy was placed. Hirschsprung’s disease is the lack of ganglion cells in the intestine, cells which allow the intestine to relax so stools can pass through.

His diagnosis came as a huge relief to his family; finally they would be able to do something to improve his health and quality of life. After his diagnosis the diseased portion of his bowel was removed, and a few months later his colostomy was closed. This was supposed to be the end of his problems, but shortly after things went downhill again for this little Tiny Light. Various procedures began including Botox injections and biopsies. A cecostomy tube was placed in fall of 2009 but this did not work well and Dustin had to have an ileostomy placed in May 2011. Over the six years of his life Dustin has made 13 trips to the operating room, endured over 20 hospital stays, and had countless tests, procedures, and doctors’ appointments. Dustin’s disease is not curable but it is treatable.

Dustin will face more surgeries in the future, but in the meantime he faces each day with courage. His family hopes people will see Dustin for the sweet boy that he is and that he’ll grow up to be happy with who he is and accepting the disease as part of himself. His amazing family worries about what the future holds for Dustin, and how he’ll be accepted by his classmates in school because of his ileostomy. All that is certain for now is this little Tiny Light is a fighter, and his family will be by his side for his journey.

Story written by Kelsey Walker.

Mason's Story

Memories Captured by Kristy Macleod Photography

Meet Mason.  This Tiny Light loves playing outside, going for wagon rides with his Papa, playing with monster trucks, playing on his tablet, building with mega blocks, and playing with his train set. 

Tiny Light Mason’s story started before he was even born.  At his 20 week ultrasound, the radiologist saw a problem with his heart. After the heart issue was discovered, his family drove five hours to Halifax for an echo, where it was confirmed there was definitely a problem with Mason’s heart. The sound echo determined that Mason had an Interrupted Aortic Arch, a condition of the heart where there is a break in the aorta, leaving the lower limbs without the necessary supply of oxygenated blood.  This condition is fatal without surgical correction. Mason would need surgery within the first week of his life.

After this Tiny Light was born, he spent a few short minutes with his Mom and Dad before being taken away to the PICU where he underwent more testing and more issues were found.  In addition to the IAA, he also had two holes in his heart, one on the top (ASD a hole in between the two upper chambers of his heart) and one on the bottom (VSD a hole between the two lower chambers of his heart).  Mason stayed in the PICU until he had open heart surgery at just six days old.  His surgical team was successful at fixing all three of his heart defects! Mason remained in hospital for 22 days, and made an amazing recovery. Later, at nine-and-a-half months old, Mason went for his second open heart surgery; just three days later he started to crawl!

Mason could potentially have a shorter lifespan, but his life will be his own. So far Mason has not been limited by his condition, and his family hopes he never will be. He is clear to play sports and be active as much as any other child, and his family encourages him to do so. All his family wants for him is happiness; they hope that he will pursue a fulfilling career that he will enjoy and that he will find love. His family’s biggest fear is that they may outlive him, but they, of course, hope that will not the case.  This journey has taught his family many things, but his mom shares the following words with families going through similar situations: “You will learn more about living and loving than you could ever imagine.” Tiny Light Mason is a true fighter and has faced many challenges in the beginning of his life, challenges that many of us cannot even imagine. 

Story written by Kelsey Walker
Edited by Adelle Munk

Kael's Story

Images Captured by Cormack Photography 

Meet Tiny Light Kael.

This little Tiny Light loves riding on his 24V John Deere tractor with trailer and riding in his Dad’s truck towing the cargo trailer or “fifth wheel.” Kael loves spending time with his grandparents and really likes being in the water—from playing in the bathtub to swimming in the lake. Also, his family says he gives the best snuggles.

Kael was born on time with no complications. Everything seemed normal until he was about six months old and his weight and head circumference started to fall off the charts. Testing from the age of six months to six years turned up nothing. Kael’s family had no answers as to what was causing his condition. It was after his third MRI that his parents, Kristine and Cam, received a phone call from the neurologist informing them that Kael’s white brain matter had gotten brighter, which indicated the possibility of a brain disease.

After further testing, Kael was diagnosed with type 1 Cockayne syndrome, a genetic disorder characterized by poor growth, premature aging, sensitivity to sunlight, moderate to severe developmental and neurological delays and a shortened lifespan. We’re not sure what the future holds for this little Tiny Light. All his family hopes is that Kael can enjoy the people and places he will encounter in life and to “just be a happy boy.”

Written by Kelsey Walker
Edited by Karin Keefe