Mariyah's Story

Images Captured By Aspectus Photography

www.aspectusphoto.com

Tiny Light Mariyah has been defying the odds from even before she was born. Now, nothing can slow down this curious one-year-old who tries so hard at everything and smiles through all of it.

When mom Shama started having contractions at 23 weeks gestation, doctors said the baby’s chance of surviving the delivery was only 2%. Mariyah weighed just 507 grams at birth, and was immediately rushed off to the NICU. She survived but faced several life-threatening battles over the first six months of her life. This preemie suffered a brain bleed, bleeding in her cerebellum, she had heart surgery to close a duct (PDA), stomach surgery to remove adhesions from necrotizing enterocolitis, numerous bouts of infection, chronic lung disease, and one scare of meningitis. Through it all, Mariyah remained a feisty little baby, always kicking, grabbing and pulling at her wires and tubes.

Though parents Shama and Irshaad were told their baby girl would likely be

severely disabled because of the brain bleed, Mariyah continues to develop right on track for her adjusted age. The left side of her body is weaker, but that doesn’t stop this princess from getting what she wants. She is pulling to stand and walks with help. By her next birthday, she should be like any other two-year-old.

This Tiny Light never gives up. Even in the darkest days when everyone thought

she would not make it, she kept fighting. “In one year, Mariyah has been through

more than my husband and I have been through in our entire lifetime. She has given everyone who knows her a reason to believe, and provides us with a daily reminder of how fortunate we are in life.”

Written by Elaine Yong

Fox's Story

Images captured by Anna Jones Photography

www.annajones.ca

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

Nolan's Story

Images captured by Lynne Williams Photography

www.lynnewilliamsphotography.ca

It’s not about limitations, it’s all about possibilities for Tiny Light Nolan and his parents. Nolan just turned 4 years old and he is thriving, proving all the doctors wrong with his determination and resilience.

Nolan was born premature at a wee 3 pounds 13 ounces. He spent more than six months in the NICU battling a number of complications including stop-breathing episodes, which required resuscitation. He has since been diagnosed with several conditions including Cerebral Palsy, low muscle tone, epilepsy and global developmental delay. This has meant four surgeries and countless medical appointments.

While it has been heartbreaking for Anna and John to see their son in pain, they focus on the small victories every day. “Nolan is our miracle baby. We do not define him by his diagnosis and truly believe he is meant to be as he is.” Although he can’t talk, this resourceful little boy has been able to find ways to communicate. He rolls his eyes away when he wants you to stop, a shoulder shrug means he’s full, and a cluck of the tongue is for a sip of water.

This Tiny Light is all smiles when enjoying a dance with mom or dad. He also loves the swings and playing in the water. No one knows what the future holds for Nolan, but this family is firmly focused in living in the present. “Take each day, one at a time, and be thankful for the little moments and little successes because when you look back, they may be the big ones.”

Benjamin's Story

Images Captured by Devon Hall Photographics

Despite everything Tiny Light Benjamin has gone through, he is always happy and full of smiles. This little boy has been a fighter since he and his twin brother Kyle were born at 25 weeks gestation. Benjamin weighed just 1lb 7oz. 


Doctors could not predict the kind of life Benjamin would have after suffering a stroke but parents Gary and Greta wouldn’t give up on their baby boy.  He has had many health challenges including surgery to repair a duct that didn’t close at birth. He also had hydrocephalus which required an endoscopic procedure on his brain.  Benjamin is fed through a G-J tube and he needs help with his breathing due to lung damage. He is on medication for seizures as well. 


Earlier this year, Benjamin became extremely sick from a respiratory virus. He ended up at BC Children’s Hospital for three months and had to be on ECMO (heart-lung machine) for two weeks. Doctors weren’t sure if this brave 4 year old would survive, but he has thrived. “He is back to baseline and even a little further. He is amazing the doctors with his progress since being so sick.” 


Benjamin loves playing with his twin brother and younger brother Devon. He enjoys going for walks with the help of a crocodile walker. He also enjoys music and reading books. This Tiny Light and his positive attitude have been such an inspiration to his family.  The future is uncertain but his parents have one big wish, “Most of all we hope he just enjoys being who he is.” 


Written by Elaine Yong

Sofie's Story

Images captured by Mellissa Receveur Photography

If you could measure hope on a scale, then darling, little Sofie would have weighed in at much more than her 586 gram birth weight! Sofie was born 16 weeks premature but started her fight for life much earlier than that. At 22 weeks gestation, her mother started to dilate, and three days later, her water broke. Sofie's parents were told that there was no hope. She showed them all that it was up to her! She hung on for nine more days and was born via C-Section at 24 weeks. She went on to amaze everyone during her 140 day stay in NICU, with her tenacious personality being exhibited while she was pulling out her breathing tube and feeding tubes. I can just hear her at two years old telling everyone, "I can do it myself!”


So at her corrected age of five months, this Tiny Light has fought her way through three months on a respirator, a round of antibiotics, fives blood transfusions and numerous X-rays. She has passed the hearing test, avoided laser eye surgery after a worrisome bleed, and has taken well to nursing and the bottle. It’s no wonder this little spark brings smiles to everyone she meets! Who can resist a girl with spunk?


Grateful for the professional support they have had, her parents wish to remind other parents that while in the hospital, “you are your child’s voice – stand up for them by being informed and strong."


Sofie's mother hardly dared hope for the life of her little one before her birth. Now Sofie shows her that there can always be hope. She inspires her Mother with a strong will and determination to fight for each milestone. Sofie's Mom says, “You can never have a bad day or feel sorry for yourself when you just have to look at her and see a beautiful happy girl who grows in front of your eyes; smiling, happy, laughing, chatting and watching hockey with her Dad."


This amazing little fighter is not out of the ring yet, with a compromised immune system and a barrage of therapies to get through, her parents believe that, "the Sky is the Limit!"  They will continue to challenge and encourage her with hopes that their baby will grow up to be a "strong, bright, independent girl who has big goals and dreams." 


Story By Francis Cawley

Sam's Story

Images Captured by Anastasia Photography

Meet Tiny Light Sam. This happy little guy loves snuggling with his mom, playing with his dad, and watching his sister be silly.Though he has had more happen to him in the first year of his life than most people go through in a lifetime, he greets every day with a smile.
Sam was born at 27 weeks and 5 days, on his father’s 40th birthday. He weighed only 698 grams and spent 110 days in the NICU, requiring respiratory support nearly the whole time and undergoing numerous procedures including blood transfusions, x-rays, heel pokes, and drug treatments. Through all this, his parents remained optimistic, hoping to send positive energy to their son.
Today, Sam weighs over 14 pounds and is nearly meeting all developmental milestones. He may face motor and cognitive delays and his immune system and lungs are compromised, but he gets stronger every day. Sam’s mother encourages families to reach out to each other while in the NICU. This helped her stay strong and also resulted in making new friends who understand the struggles of raising a child born prematurely.

His parents are concerned about what challenges may lay ahead, but know that their son is strong. “I worry that the possible developmental delays he may experience would mean that he has to work harder than some but I know already that he is one tough cookie!”

Story by Emily Harrison

Kensey's Story

Images Captured by Kate Mahaits Photography

Tiny Light Kensey has gone through a lot in her first year of life.  She was born three months premature, which meant numerous blood transfusions, antibiotics and a ventilator for two months.  This determined fighter also underwent heart surgery and required a chest tube.

It was difficult for the family to be away from home for so long while their baby girl was in hospital, but the day Kensey came home was very special. Now, this happy little girl gets lots of cuddle time with mom and dad.  She loves being outside and going for car and boat rides.  It’s easy to get giggles out of Kensey with her ticklish legs.

Parents Colette and Scott have advice for other families going through difficult medical journeys, “Stay positive and make friends with other parents who have gone through similar circumstances.”

This Tiny Light has a bright future ahead and should require only minimal assistance with occupational therapy and physiotherapy.  “We love Kensey very much and look forward to many happy years and memories together.”

Story written by Elaine Yong

Faith & Joy's Story

Images by Bittersweet Photography

These Tiny Light twins could not have been more appropriately named. Meet Faith and Joy. These sisters were born premature at 23 weeks and 5 days. Faith weighed 1.6 lb and Joy 1.7 lb. They each underwent heart surgery at 2.5 weeks old, weighing less than 2 lb each. Now two years old, Faith and Joy love being read to and watching In the Night Garden. 


Both girls now have cerebral palsy. Joy is parapelgia and Faith is hemipelgia. This means that Joy has it throughout her body and Faith just in part of her body. Joy's CP diagnosis came about four months and Faith six months after their six-month NICU stay. While no one was surprised, it was devastating. Faith and Joy’s parents were told that their daughters had a 4% chance to live if they made it past the first 24 hours. “We are so grateful and thankful to have them both here with us. We will take them anyway we can get them!”  


The hardest part of the journey is the fact that they don’t know what is coming next. The girls have limited range to be able to do very much. Joy will most likely be in a wheelchair due to her inability to be mobile. Faith will likely need a walker, or she may also require a wheelchair like her sister. The girls’ mom only wishes that her girls will both accept who they are and be happy with themselves. She doesn’t have fears, as the girls have already overcome so many obstacles that she is certain they will be able to overcome anything handed to them.  


“As long as you have Faith, in the end you will have Joy!” 


Story by Angela Stephen-Dewhurst 

Meet Little Darius

Images Captured By Rhonda Steed Photography

Meet Tiny Light Darius.  Born only this past March, Darius has already overcome many obstacles.  Each day, he demonstrates to his family and friends his willingness to fight and grow stronger.

Darius was born prematurely at twenty seven weeks, both him and Mom experiencing many complications along the way.  His doctor expressed serious concern when his white blood cell count came back high, and he was put on a Continuous Positive Airway Pressure (CPAP) machine to help regulate his breathing.  At one month of age, moisture was found in his lungs and doctors continue to clear them out.  It is uncertain as to whether or not Darius will experience difficulty in areas of development in the future.  

The hardest part of their journey so far has been the first few days when Darius needed to be isolated; his parents were only able to touch him through the holes of the isolette and were unable to pick him up.  He was on oxygen, and had many wires and tubes helping to improve his health.  At the time, Dad was also working in Lethbridge and was only able to make it to Calgary to see them on the weekends.

His parents have learned that asking questions and being willing to do anything for your child will help bring you closer to your baby sooner.  Support from family and friends helps Darius’ parents keep strong and stay positive when they are feeling anxious.  

Darius’ test results continue to come back positive, alleviating some of his family’s fears.  Even though Darius is still small for his age, he has started cooing and kicking while playing in his crib.  He also enjoys checking out the scenery around him.  His family is hopeful that Darius will catch up and pass all of life’s milestones; they have faith that he will grow up to be a very bright child. 

Story written by Kristi Hall - Busque

Mikaela's Story

Images Captured by Michelle Wells Photography

Meet Mikaela. This Tiny Light is happy doing regular newborn stuff! As long as she is eating she is happy!
Mikaela was born 13 weeks premature. She was one of two co-existing twins in a molar pregnancy. The egg had split into what would have been identical twins, but one didn’t develop. Mikaela did. Because there have only been 300 documented cases of this scenario since 1954, the doctors were unsure how to care for them. After putting up a huge fight, Mikaela’s mother convinced the doctors to let her continue with the pregnancy.


It was found out after Mikaela could not be weaned from oxygen, that she had BPD, a chronic lung disease that affects newborn babies. She will continue to have follow-up appointments every two weeks for this condition. She also has follow-ups for her ROP (retinopathy of prematurity).  She has passed three tests so far!


The most difficult part of this journey for Mikaela’s mom, aside from the health problems that Mikaela has been challenged with, is only getting to see her other daughters on weekends. While it was necessary for her to be with Mikaela, she longed for her other children.


Mikaela has doubled her birth weight, an amazing thing for everyone around her to see. She has also learned how to nurse and come off of CPAP (continuous positive airway pressure). Mikaela continues to progress so much, making every day amazing and spectacular. Mikaela started fighting long before she was even born to live. “The road is long but worth every second. Thinking about the past few months brings tears of joy!” 


Story by Angela Stephen-Dewhurst