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.

Zaccary's Story

Memoires Captured by Trevor Allen Photography Inc.

Meet Tiny Light Zaccary. He’s a bright boy who enjoys reading and counting, likes Thomas the Tank Engine and helping his mom and dad cook and clean around the house. He loves oatmeal and would eat up to eight bowls if you let him! Even though he always has a smile on his face, he’s been through a lot in his short life.

Just after his second birthday, Zaccary started changing. He became shy and withdrawn, he was pale, and he began walking with a slight limp. For the next few months he battled one infection after another until he got to the point where he refused to walk. His parents took him to the emergency room and though they didn’t get an official diagnosis right away, they knew in their hearts something was horribly wrong.

On May 24th, 2011 Zaccary was diagnosed with stage 4 high-risk neuroblastoma (three tumors, bone marrow infiltration and bone disease) and given a 33% chance of long-term survival. Given the news, his parents felt as though their hearts were being ripped out. They say the hardest part was watching him suffer, wishing they could take the treatments for him.

After a long road of aggressive treatments, Zaccary has been in remission for two years now! A major accomplishment for this type of cancer. He is thriving in every way and has a voracious appetite, liking everything from raw onions to Caesar salad. He also wants to be a doctor when he grows up. Although the road has been a rough one, his parents remain positive. His mom says it best, “I live every day reminding myself to stay in the moment, enjoy my son and the time we have together. It’s hard to not dwell on the past and fear the future, but he is with us in the moment, so we are with him too.”

Written by Adrianna Tailleur

Elizabeth's Story

Tiny Light Elizabeth is a spunky little three year old who has a smile for everyone she meets. Her determination and feisty spirit has allowed her to already overcome so many obstacles. Elizabeth loves reading, music and dancing. She has an incredible memory and learns things quickly.  Elizabeth is also quite opinionated and independent, which often results in hilarious clothing combinations and interesting arguments, including why she can't walk her imaginary friend home when she's supposed to be going to bed. Elizabeth often tells people her name is “Princess” and her mother says, “she embodies that personality type fully!”

Following a routine ultrasound, Elizabeth's parents were told that their daughter had a complex, congenital heart defect. She was born with a hypoplastic (small and underdeveloped) right ventricle, tricuspid atresia (a missing tricuspid valve) and a ventricular septal defect (a defect in the wall dividing the left and right ventricles).  

At 3.5 months, Elizabeth underwent her first open heart surgery to have the first of a two-step repair and in March of this year, she received the second and final step. Some complications resulted in a three-month hospital stay, but now Elizabeth is home and healthy. She will not require additional surgery until her teens or early twenties, when she will receive a heart transplant.

While the journey has been difficult for Elizabeth's family, they have learned to be grateful for every moment they have with her. Her mother says: “She has helped me find joy in simple things, she brings light and happiness to all situations. Elizabeth's life is an awesome testimony of God's power and grace and being able to share that with others is a privilege.”

Story by Emily Harrison

Doreen's Story

Images Captured by Sherry Penner Photography

At age 19, Tiny Light Doreen isn’t so tiny anymore, but she represents the
courage and strength that connect all the children who are a part of the Tiny Light
Foundation. She’s beaten the odds and refuses to allow her disability to prevent her
from achieving what she wants to achieve.

Doreen was born with spina bifida myelomeningocele. This severe birth defect is
caused by the failure of bones in the spine to fully develop, causing the spinal cord
to protrude out of the back. Surgery corrected this problem but Doreen was left with
difficulties walking and other issues caused by the defect. When she was adopted
at age three and a half, Doreen’s new family saw to it that she had tethered cord
surgery and, despite doctors’ predictions, she was able to walk unassisted by the age
of four.

Doreen’s hope and determination have enabled her to live her life the way she
chooses instead of allowing her disability to determine her course. Doreen’s mom,
Ada, says, “People with spina bifida are able to do lots of things, just in a different
way than most people.” Doreen enjoys hanging out with friends, swimming, playing
sledge hockey and sharing her hope with the children she meets in the hospital.
Doreen may face more surgeries and will certainly have further challenges in the
future, but she doesn’t allow any of that to get her down. She is an inspiration to her
family and friends and especially to her birth father, with whom she was recently
reunited.

Story written by Angela Funk
Edited by Karin Keefe

Bayleigh's Story

Images Captured by Krystina Repchuk Photography

Meet Tiny Light Bayleigh. She loves water, books, her dog George,
dancing and music. She just started kindergarten this year and
absolutely loves it! Bayleigh was a wonderful surprise for her parents
as they didn't think they could have any more children.

Shortly after Bayleigh was born, her parents discovered that she had
many lung and heart problems. At the age of three months, Bayleigh
underwent a heart transplant. Afterwards, she had a tracheostomy
for long term ventilator use. She was also diagnosed with scoliosis,
but fortunately is able to walk. She called the hospital "home" for 17
long months before she was finally able to go to her real home with
her family.

Bayleigh is a very strong girl. She lives life to the fullest every day
and always has a smile on her face that can brighten anyone's day.
Her parents are amazed by her strength and will for life.
They say, “We don't know what the future holds for Bayleigh or for
us, but we try to live life to the fullest with her.” Seeing Bayleigh’s
beautiful smile every day helps them overcome any
feelings of fear they may have about her future.

Story written by Adrianna Tailleur
Edited by Karin Keefe

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

Conrad's Story

    Meet Tiny Light Conrad, a very friendly boy who loves making new friends. He likes playing with cars and trucks, and watching Sesame Street and Cars videos on his ipod. He really enjoys riding his quad outside and especially loves fishing and helping his grandpas drive their boats—all the things that a typical three-year-old boy would enjoy. But there is something that sets Conrad apart from most three-year-olds and it has caused his family’s whole world to tremble.
    

     On May 27, 2011 Conrad was diagnosed with acute lymphoblastic leukemia. On top of his threeand-a-half-year treatment cycle, Conrad also deals with fevers every three months no matter what is happening. His parents say the hardest part is watching their son go through all this and not really understanding why or what he’s going through. When he does get a fever, Conrad doesn’t understand why he is in the hospital for days, sometimes even weeks. That, too, is hard on his parents.
    

    Despite the daily struggle this little warrior faces, he tackles it head on with amazing courage for a child his age. He takes it all like a true champion and pushes through every challenge thrown at him, not letting anything slow him down. The possibility of relapse scares his parents the most, but they remain positive, focusing on the “now” and not the “what if’s.” Advice they have for other parents in similar situations is to “stay strong, stay positive, ask lots of questions and be your child’s advocate.”

Images Captured by Simply B Photos
Story written by Adrianna Tailleur

Logan's Story

Images Captured by Samantha Jiwa Photography

This Tiny Light has tremendous toughness underneath his cute exterior.  By the time Logan was three and a half months old, he had already been through more health challenges than some people face in a lifetime.

The ordeal began just two months after his birth, when Logan spiked a fever.  His mother Katelyn took him to the local emergency department and as the hours went by, little Logan developed a rash and grew very pale.  He was diagnosed with meningitis and transferred to the nearest children’s hospital.  After an MRI was performed, a team of neurosurgeons went to meet with the family.

The MRI had revealed that a dimple at the base of Logan’s lower back actually had a little hole in it leading directly to his spinal cord.  E. coli bacteria from his feces had been getting into the hole, causing the meningitis.  Surgery was the answer to the problem, but Logan’s unusual story wasn’t over yet.  As the surgeons followed the hole through to Logan’s spinal cord, they discovered and removed a tumour, and an abscess which had been draining into his spinal fluid.  Also, there were other abnormalities which made the operation especially challenging.  

Logan spent a total of five weeks in the hospital, but as Katelyn says, “The most amazing thing was watching him go through such a hard thing and be so cooperative with the staff with blood work and bandage changes and anything else they needed to do.”  Months later, this Tiny Light is doing well with no apparent regrowth of the tumour.  He is being monitored for any long-term effects from the meningitis and the spinal cord abnormalities.  

Written by Jayne Akizuki

Owen's Story

Images Captured By Jamie Allport Photography

Tiny Light Owen is a happy little guy who loves making his mommy and daddy smile. He enjoys holding toys, saying the few words he has learned, and holding up his good leg so his parents can “eat it”. He has surprised everyone with his strength and determination and continually proves doctors wrong by learning to do what they say he will never be capable of.

Owen was born in March of 2011 in severe respiratory distress. He spent the majority of his first year in the hospital and was finally diagnosed in March 2012 with CHARGE Syndrome, a rare genetic disorder. CHARGE Syndrome consists of a wide variety of birth defects that vary depending on the individual. “C” stands for coloboma of the eye (a hole in one of the eye structures), “H” for heart defects, “A” for atresia of the nasal choanae (a blockage in the back of the nasal passage, caused by abnormal bony or soft tissue), “R” for retardation of growth and/or development, “G” for genital and/or urinary abnormalities, and “E” for ear abnormalities and deafness. Owen has overlapping skull plates, lower set ears, choanal atresia, narrowed eardrums, an atrial septal heart defect, laryngomalacia (weak cartilage), a small trachea, larynx, and windpipe, as well as hydronephrosis of his kidney (water in the kidney), umbilical and inguinal hernias, and hip dysplasia.

With the exception of the odd surgery or feeding tube complication, Owen is doing well. Most children with CHARGE Syndrome don’t survive their first year, but Owen is two years old and continues to grow stronger. He has recently learned to sit on his own for up to 40 seconds! While the future is uncertain and more challenges are likely to arise, Owen’s parents remain hopeful. Problems can arise at any time and even the common cold can cause major complications. While there have been many moments that have been difficult and scary, they are thankful for every day they have with their son. As his mom says, “He is perfect in every way and I know I wouldn’t trade a second of this journey for any other.”

Story by Emily Harrison