Addison's Story

Images Captured By brand One Studios

 Meet Tiny Light Addison. Though she is young, Addison already has an amazing spirit. She loves story time and her favorite book is Dr. Seuss's 'Oh The Places You'll Go'. This book was recommended by Addison's transplant surgeon, and her parents find it very appropriate for their sweet girl.

Addison was born a healthy baby. Her first three weeks were spent as a regular newborn. The day before she was three weeks things changed. Her skin became cool and pale, her lips had a blueish tint. She refused to nurse and her cry became a wail. Something wasn't right. Addison's parents immediately took her to the hospital. "In hindsight it was one of the best decisions we could have made and it was one of the many things that saved our daughter's life."

Addison's heart was failing. Within hours her parents were preparing themselves for the possibility of their three-week-old baby having a heart transplant. Addison's parents were hoping that her heart would start working as she was put on the top of the transplant list, Canada-wide. Less than two days later they got the call - there was a heart for Addison. Addison got her new heart, and second chance, on Mother's Day. The new heart didn't work right away, and she was put back on the heart-lung machine after the surgery. Next day everyone rejoiced. Addison had a pulse!

An examination of her old heart showed that she had a rare condition that is developed in utero called Non-Compaction Cardiomyopathy. Since her surgery, Addison has thrived. She is now doing very well, and her parents are enjoying every single moment with her to the fullest, as this experience has put into perspective how fragile life really is. Addison's parents have also found it difficult to think about the other family, willing to say yes in their darkest hour. "They have given us the ultimate gift. There is no way to thank them for that."

"We spent some time talking to a psychologist and bioethicist in the first few days of Addison's hospital stay. They both told us something that really stuck with is - 'Your child will tell you if he/she wants to keep fighting'. I thought this was a little far-fetched, especially in the case of a 3-week-old baby. How could a baby communicate something so complicated to us? Well, they were right." Children with heart transplants are living longer and better lives. While long-term prognosis is uncertain, Addison will continue to take anti-rejection medication for the rest of her life. While she has virtually no-immune system right now, Addison in many ways will lead a normal life, going to school, and travelling with her Mommy and Daddy!
Story by Angela Stephen-Dewhurst

Casper's Story

Images Captured by Asher Images

 With a due date of December 31st, Tiny Light Casper was determined to be one special baby right from the beginning. After a difficult pregnancy, he arrived 14 weeks early, weighing just 1 pound 11 ounces.  Doctors expected him to be in hospital until at least New Year’s Eve, but this “Little Spirit Boy” proved them all wrong. Casper got to celebrate his first Christmas at home with his parents and two siblings.

Casper spent 76 days in the NICU battling several medical issues.  It turns out mom Amy’s placenta was full of infection, which was passed on to her baby. Casper had to fight that off plus deal with apnea and heart spells where his heart rate would drop dramatically. He also endured two bouts of a severe intestinal infection unique to preemies. Through all of it, this little fighter has thrived.

Now Casper is at home, but he has a few major health hurdles ahead, includingeye disease and surgery for two hernias. However, the biggest challenge he faces is an extremely severe allergy to animal protein. This means Casper needs a special formula that is very costly – and not covered by health insurance. The family is struggling to find a way to pay for the extra expenses. With two other children, 6-year old Anastasia and 5-year old Ephraim, who are also special needs, parents Amy and William are stretched to the maximum.

The family’s first photo session at the hospital included one of Casper’s primary nurses Loretta. “Loretta was so amazing with Casper and was like a second mom she just loved our little boy so much.” The upcoming at-home session will include the whole family.

It has been amazing for the entire family to be together through the holidays. There is a big celebration planned to officially welcome Casper home early in the New Year. And though the path ahead is not easy, there is so much love to pave the way. “No matter how overwhelmed we may feel, when we see him we are just in awe of him. We feel like he completes our family and brings so much goodness, joy and light to our lives. We can’t imagine Casper not being here.”

Written by Elaine Yong

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

Amy's Story

Images Captured by Orange Passion Photography

Meet 7-year-old Amy. This Tiny Light is described by those who love her as 'joyful and in the moment' all of the time. She loves being read and sung to, going for walks, and watching Baby Einstein movies. 

Amy was physically 'normal' until she was a year and half. Her diagnosis of sodium channel genetic disorder came when she was three. Amy is fully dependent for all bodily functions, has minimal purposeful movement, and is non-verbal. She has medical vulnerabilities such as seizures and respiratory illness, orthopaedic concerns, and metabolic, endocrine, GI, neurological problems, etc. 

Amy’s parents knew there was no treatment or definitive prognosis associated with her diagnosis. Amy isn’t like other kids with sodium channel genetic disorder. She is unable to understand an explanation of her disorder. Her parents struggle to figure out how she is feeling physically and emotionally, as  she is unable to tell them. 

Amy's parents will likely outlive her. The fear of the unknown is great for everyone who loves and cares for Amy. She will likely never walk or talk, and will probably always need full-time care. Her parents wish that she will never have to suffer and that she will always have whatever care she needs. They have a strong faith and this helps them to concentrate on Amy, and not dwell on fears.

Story by Angela Stephen-Dewhurst

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

Tommy's Story

Images Captured by Birds on a Wire Photography

Meet Tiny Light Tommy.  This happy, little two-year-old enjoys singing, eating, playing, crawling and getting into trouble.

Tommy was diagnosed with Down Syndrome at birth, and his parents were shocked.  It took his father some time to accept the diagnosis.  The hardest part of their journey so far is living in a small town with no other children with Down Syndrome close to Tommy’s age.  His parents worry that he might be made fun of because of his disability.

Tommy keeps busy with physiotherapy, speech therapy, and occupational therapy.  He is healthy and his parents are confident that he will reach all milestones of a typical developing child, just on his own timeline.  They hope he lives a “close to normal” and happy life and gains independence in time.
“Having a child with Down Syndrome is not a negative thing, it is just a different type of normal.”

Story by Emily Harrison

Tye's Story

Images captured by Photography by Elma

Meet Tiny Light Tye.  This three-year-old, “amazing little man” loves playing outdoors, swimming, watching movies, and playing with cars.

After many days of illness, including extreme thirst and vomiting, Tye was diagnosed with Type 1 Diabetes, a non-preventable autoimmune disease in which the body's immune system attacks and destroys the insulin-producing cells of the pancreas.  The most severe form of diabetes, it strikes children and adults suddenly, leaving them insulin dependent for life.   Insulin is not a cure, nor does it prevent complications which may include kidney failure, blindness, heart disease, stroke, nerve damage and amputation.  His parents were heartbroken and devastated, but determined to learn as much as they could to support their little boy.

“He is strong,” say his parents.  “He is our hero and our angel.”

Story By Amber Grant

Christian's Story

Images Captured by Misty Dawson Photography

Tiny Light Christian always has a smile on his face, despite the struggles he faces every day. He is a “low-key kind of guy” who enjoys spending his time in quiet and peaceful environments. He is very affectionate and loves when his mother runs her fingers through his hair as he falls asleep. He also loves relaxing in the pool and being in his Snoezelen room (a controlled multisensory environment). 

After a healthy pregnancy, Christian’s mother had complications during her delivery. Due to a lack of oxygen to his brain, Christian was born with cerebral palsy with spastic quadriplegia and global development delay. He also lives with a severe seizure disorder, scoliosis, and cortical blindness. Christian requires a feeding tube and reacts poorly to too much stimulation, noise, and even the weather. He requires constant care and supervision and needs someone to provide suctioning so he does not choke.  Because of this, it is challenging for him to leave the house with his family.

Last year marked a milestone for Christian, as he exceeded the life expectancy his doctors predicted. His health continues to deteriorate but his family cherishes every moment they have with him. Christian has had an incredible impact on his family and those around him. “He has brought a whole new meaning to life and has led us down a path we wouldn't have known if not for him.”

Story by Emily Harrison

Madden's Story

Images captured by Devon Hall Photography

This Tiny Light is a flirt who can charm anyone he meets.  Madden is only two, yet people are drawn to him and find inspiration in his story. 

Born premature, Madden has an adrenal syndrome.  This means he doesn’t make enough of certain hormones and will require hormone replacement therapy when he is older.  He also has interstitial lung disease, which is very rare in children and causes scarring of the lungs.  All this has resulted in failure to thrive.  Madden doesn’t gain weight or grow like other children his age. 

None of this has slowed Madden down.  He has so much energy, especially for his favourite activities: dancing, swimming and soccer. 

Madden faces a lifetime of doctors’ appointments, procedures and medications.  But his mom hopes her Tiny Light knows no limits, no doors will be closed, no opportunities missed, no passion undiscovered.  “It seems like Madden has been my child forever.  I have a hard time remembering a life without him – he did that to me, captured my heart and soul and I wouldn’t change a thing.” 

Written by Elaine Yong