Campbell's Story

Memories Captured by Amy Symes Photography

Meet Tiny Light Campbell. He’s four years old and started school this year. Campbell uses a wheelchair and works very hard to walk in his Rifton and Kaye walkers. Campbell enjoys being with others and absolutely loves music and dancing, especially with Ellen at the beginning of her talk show.

Campbell was born prematurely and was delivered at only 24 weeks. He fought constantly to stay alive, and there were many occasions when his parents, Joanna and Bertran, were not certain if Campbell would live. After the fourth month in hospital, and five surgeries to try to save his eyes, his parents were told that Campbell would be blind. One month later, they were told that he’d also be deaf. Campbell has now been home with his family for three years, but the journey is only beginning. One year ago, it was confirmed that Campbell has cerebral palsy and may never walk. 

“We expose him to many things,” says Joanna, “bike rides, cross-country skiing, camping, swimming, yet we know that with his challenges he’ll be limited. He’s a remarkable boy with so much love and potential. He lifts our spirits and shows us the way all the time, but I still feel, at times, that he’ll be left out of many opportunities, and that truly breaks my heart.” She adds, “We are proud of him and who he is. He’s taught us so much in his four years of life. He’s a very funny little boy and has a smile that will warm any heart, and melts mine.” 

Written by Lori McLellan

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

Lilly's Story

Meet Tiny Light Lilly. She loves jigsaw puzzles, colouring, reading, playing with sand and just relaxing while watching Treehouse TV. She always has such a positive attitude and is always in a good mood. Her parents say her smile and hugs are the best in the world. It’s hard to believe this happy little girl has been overcoming challenges since the day she was born.

Lilly was born at 30 weeks gestational age, and two months later her parents were told she had cysts in her brain due to a brain bleed. These cysts were removed quickly but Lilly’s parents were warned that the cysts may have caused damage and that their sweet baby girl could have Cerebral Palsy. When Lilly was 10 months old her parents noticed she wasn’t hitting physical milestones like other children her age. At her one-year check-up they were given the diagnosis they’d feared. Cerebral Palsy. They were devastated at first. They’d known it was a possibility, but were hoping for the best since Lilly was doing so well in all other aspects.

It’s been a long bumpy road but Lilly’s made incredible progress; she’s able to walk independently with the help of her AFOs (her super shoes). As well, Lilly requires glasses and must have Botox injections every four months, which her parents say is the hardest thing for them in all of this because they hate seeing Lilly in pain. The devastation they’d once felt upon hearing the diagnosis has all but faded now. Lilly’s parents feel blessed to have her in their lives, saying, “Since Lilly was born, our outlook on life has changed completely. What seemed important before has now little to no meaning at all. She gives us strength to fight even when we have no strength left. She makes us see the world through her eyes and life is so much better that way.”

Story written by: Adrianna Tailleur

Madi's Story

Memories Capture by Photography by Eiko
 

Madi is a very strong little girl who can put a smile on anybody’s face. Madi loves watching Baby Einstein, listening to music, swinging on her swing set, playing with musical toys, relaxing in her crib and going to school. Madi loves school!

Madi was born healthy and it wasn’t until she was 7 months old her family noticed changes. Madi was unable to sit up on her own unassisted without falling over. After visiting a paediatrician, it was clear something wasn’t right so a number of tests were conducted. A muscle biopsy, MRI of the brain, genetic testing and several other tests came back with no answer. However, Madi’s paediatrician noticed traits that lead him to test for Rett syndrome, a genetic mutation that causes neurological impairment. On May 22 2012, Madi’s test results for Rett syndrome came back positive.

Madi has been affected by Rett syndrome in every part of her body; she cannot walk, crawl or stand on her own. She also cannot say any words. Her family is very unsure what the future holds for this beautiful little Tiny Light. Mom Kalle, Stepdad Ryan and baby sister Camryn just hope Madi can make the most of her life and be happy.

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.

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

Jayme's Story

Images Captured By Jodie Hadden Photography

22 month old Jayme is a happy little girl who loves swimming, hugging,
people watching and laughing. And this Tiny Light is known for her
infectious giggle!

Jayme arrived in August 2011 after a healthy, full-term pregnancy but
soon after was diagnosed with Down syndrome. It was a shock to her
parents, who were also faced with the news that Jayme had a heart
defect. At just two months old she underwent open heart surgery.

Understandably, for parents Christie and Scott there have been some
tough days. They've worried about Jayme's quality of life and her
future. But the past few years have also shown them they are supported
by an amazing family and friends.

Despite any challenges, Jayme has given her family unconditional love.
And in turn they have come to realize that she can live a long,
healthy and happy life. One that will be even happier this summer,
when Jayme will become a big sister.

Written by Catherine Urquhart

Isabelle's Story

Memories Captured by Teagan Photography
www.teaganphotography.com

Tiny Light Isabelle brightens up everyone’s day with her big smile. She loves music and shakes her arms and legs with joy when she gets to dance with her mom.

Isabelle has cerebral palsy and experiences many seizures. Unfortunately, each time she has a seizure, her development takes a step back and often, she ends up in the hospital intubated. But this seven year old just keeps up her happy attitude and never cries.

Isabelle enjoys going to school with the help of an aide. She also loves playing with water, whether it’s bath time, swimming or standing at the sink. This Tiny Light is the sweetest girl in the whole word, according to mom Laura. “Always have hope and keep your head up high. It is hard work but your child is your life and you have to do what is best for them.”

Written by Elaine Yong

Dillan's Story

Memories captured by Eye for it Photography

Tiny Light Dillan is a brave little four year old who has a fighting spirit.  He loves to race, dance, play with his cars and trains and laugh with his family.  He is quick to smile, even after feeling pain and he likes to be silly, even when he is at his sickest.  Dillan loves superheroes and is an ardent protector of his little sister Sophie.

Dillan was diagnosed with Hirschsprung’s disease at three weeks old, although the illness was evident from the day he was born.  This condition affects the large intestine - the nerve cells necessary to enable a normal bowel movement have not developed.  Over three surgeries, Dillan’s disabled colon was bypassed and he received an ileostomy which releases his waste and allows time for the nerve cells in his colon to develop.  Hopefully in the near future, he will have surgery to reconnect his intestines and ideally continue life as a normal little boy.

Now in preschool, Tiny Light Dillan struggles to understand why he has an ostomy but is otherwise doing well.  His parents await his next surgery and hope that will be his “last surgery ever”, though some children with the disease often suffer residual health problems.  His mother says, “My dreams are that he understands what has happened and helps spread awareness and knowledge, and that he keeps loving the way he does.”

Written by Angela Funk

Odin's Story

Memories Captured by Affordable Child Photography ​

Meet Tiny Light Odin. He is a mirror twin to brother Griffen. He also has an older brother, Kingston, with whom he loves to play peek-a-boo!

At 15 weeks of pregnancy, Odin’s mother was kicked in her stomach and was sent to the emergency room with the very real possibility of losing her babies. It was discovered at this time that Odin would have several congenital heart defects. Once born, the full extent of Odin’s condition was able to be determined and he was diagnosed with heterotaxy (RAI), unbalanced atrioventricular septal defect, transposition of the great arteries, double outlet right ventricle, anterior aorta, pulmonary stenosis, univentricular heart, asplenia, laryngomalacia, non-rotational bowels and midline heart.

This Tiny Light has undergone two open-heart surgeries and continues to persevere. He has gained weight since his last surgery and is able to eat by mouth after being fed via an NG tube. This will allow him to be stronger for his third surgery, which is scheduled in a year’s time.

Odin’s parents state that the hardest part of the journey has been seeing the pain their Tiny Light has had to endure. “Not being able to push away the doctors and nurses and take off all the tubes and wires...” has been difficult. As they say, “Never give up hope on how strong your child could be...appreciate every little thing life has to offer because...they will teach you hope.”

Story by Stephanie Bond