Meet tiny light Logan

Images Captured by Mercedes Leung Photography

From the moment he was born, Tiny Light Logan has been surprising everyone with his achievements. He wasn’t supposed to survive yet he has thrived. He wasn’t supposed to see yet he does. He wasn’t supposed to walk yet it’s now impossible to slow him down. This determined boy has shown everyone how each moment is so precious.

At 8 months of pregnancy, parents Renee and Alan found out their baby’s brain never fully developed in utero. Doctors urged them to terminate because they did not think the child would survive long after birth.  The family decided not to listen to that advice. Logan was born with a number of medical challenges, including a growth hormone deficiency called panhypopituitarism. He also had hydrocephalus – a buildup of fluid in the skull – and he was blind at birth.

Logan is now 12 years old and succeeding at school. He has mental and physical challenges, but he never gives up.  “He goes through his surgeries with such strength and hope. It teaches us such important lessons about life.” Logan also brings so much laughter to his family with his wicked sense of humour. This funny guy loves to use his imagination to play pretend, spend time outdoors and help out with chores.

The future is a great worry for Logan’s mom and dad. They hope their son leads a full life surrounded by happiness. Already, this Tiny Light is doing just that, one small success at a time.

Written by Elaine Yong

Dillon's Story

Images Captured by Tricia Marie Photography

www.TriciaMariePhotography.ca

Meet Tiny Light Dillon.  Dillon loves hanging out with his brother James, playing with his ‘Guys’  (Sesame Street toys), reading, playing hockey and playing with his cars. He has a huge heart and is very affectionate. Dillon is also incredibly strong willed, something that has helped him and everyone around him throughout his journey.


Dillon was born via C-section. His parents were told right away that Dillon has Spina Bifida. They were devastated. Dillon’s first major surgery took place away from home. Doctors and nurses were all optimistic about his recovery. The focus was staying positive and getting Dillon home. They were on the right path.


Throughout multiple surgeries and ongoing tests, casts, poking and prodding, Dillon remains strong.  It is hard for his parents to see him in uncomfortable situations, especially when they upset Dillon. Still, he is a strong resilient boy. He remains unaffected, and has never let a cast slow him down!


Dillon will most likely have walking issues for the rest of his life. He does not have much feeling in his legs/feet from above his ankle to his toes. He has had surgery to release the tendons in his feel, but doesn’t have the motion to lift his feet up and down in the ankle area.  He has close to no bladder/bowel control. His head will always be monitored to make sure his shunt is working.


Dillon’s parents do fear school days. They wish that Dillon will always be included and that he will have the confidence to be able to deal with anyone that may come along and point out his differences. Dillon has taught his family that things don’t have to be picture perfect. Surely he will teach this same lesson at school and beyond!


Story by Angela Stephen-Dewhurst

Anthony's Story

Images Captured by Gabi Moller photography

There is only positive energy allowed in Tiny Light Anthony’s life. His family has even adopted an uplifting motto - “good times are coming one day at a time”. 


After a normal pregnancy and delivery, at just 3 days old, Anthony had a 7 minute long seizure. His parents were devastated to find out their first child had suffered a stroke in utero. Even now, doctors still aren’t sure of a diagnosis or what the long-term future holds. 


Anthony has developmental delays affecting several parts of his body. He has a form of Cerebral Palsy, which means he can’t walk, sit or crawl without support. He needs to be tube fed through his stomach. His vision is impaired and he is non-verbal. Anthony is on a cocktail of medication to control epileptic seizures. 


Through it all, this lovable 5-year old can’t get enough hugs and kisses. He makes friends everywhere he goes. He has taught his family so much about compassion and unconditional love. “My little man NEVER gives up on life…so how dare I give up on him?” 


His parents are committed to giving their beautiful boy the best life possible. The family home has been remodeled to make it wheelchair friendly, including an elevator at the side of the house. “Anthony is here for a reason. We might not know why this tragedy happened or why he is here, but his story is not finished yet and is still continuing.”



Story 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 Jamie

Images Captured by Thibodeau Designs Photography

Meet Tiny Light Jamie!  This sweet two-year-old has an amazing ability to make people smile.  She loves playing with her cousins and spending time with her grandparents.  Jamie has her Daddy tied tightly around her finger!

When Jamie’s Mom was 20 weeks pregnant, it was discovered that Jamie has Hypoplastic Left Heart Syndrome.  This means that the aorta and left ventricle are very small, and that the aortic and mitral valves are either too small to allow sufficient blood flow or are closed all together.  As blood returns from the lungs to the left atrium, it must pass through and atrial septal defect to the right side of the heart.

Jamie’s parents were devastated at the diagnosis of their baby.  Still, they knew that this was their child, and they loved her regardless of any issues that she had. Jamie’s parents have had the hardest time seeing their sweet girl after surgeries, hooked up to machines. But they remind themselves that it’s all to help Jamie.

Jamie’s parents encourage other families with ‘Heart Babies’ to live life day to day with their child, keeping their heads up.  “They may be ‘special’ but they are your ‘special’ child.”

Story by Angela Stephen-Dewhurst

Carson's Story

Images Captured by Cormack Photography

That big beautiful smile hides a mischievous side of Tiny Light Carson.  Turns out this 6 year old is a thrill seeker who likes sledding and rides that spin.  And for his parents Ronan and Shyla, Carson’s journey has been a whirlwind too.


Three weeks before his due date, an ultrasound showed enlarged ventricles in Carson’s brain.  Shyla says, “The hardest time of our lives so far was when we were forced to contemplate what life would be like without our precious child while he fought to survive several life-threatening seizures and respiratory infections.”


It took four years and many genetic tests before doctors were able to diagnose his extremely rare condition.  Carson has 1q 44 terminal deletion, which means he is missing genetic material at the end of his 1^st chromosome.  He lives with a global developmental delay, a seizure disorder and a swallowing dysfunction that requires him to be fed through a tube.  


The family has not just survived, they have thrived.  Carson is loved by everyone who meets him and he serves as inspiration for the entire community.  This Tiny Light is making big strides – he just learned to walk in August.  His parents have big hopes for their affectionate son.  He now goes to school with his big brother…maybe they’ll graduate high school together down the road.  “We spent the first few years not daring to dream, but now we are strong and so is our vision for Carson’s future.”


Written by Elaine Yong

Brooke's Story

Images Captured By Scuffed Boots Photography

Meet one-year-old Brooke.  This Tiny Light loves reading stories and loves her cats.  She loves being chased and tickled!  She has a crazy amount of energy, which is infectious to anyone and everyone around her!  Brooke is so sweet and has been a strong girl throughout her journey!

Brooke was born with Congenital Heart Disease.  She had two holes in her heart (AVSD), pulmonary stenosis, parachute mitral valve stenosis and tachycardia (a racing heart).  She underwent heart surgery at only three months old to repair the two holes.  As if being new parents is not overwhelming enough, Brooke's parents were quickly learning the ins and outs of the medical system.

Brooke's parents wish for a future with no further heart surgeries, something that is uncertain at this time.  They trust the medical system and are provided huge amounts of comfort by this trust; because of this system, they still have their daughter.  While the thought of possible future surgeries are a constant worry, Brooke's parents do not let it get them down.  "We just have to look at her with her ball of energy, and she reminds us to live in the present!"

Story By Angela Stephen- Dewhurst

Benjamin's Story

Images captured By HRM Photography

Meet Tiny Light Benjamin!  A mighty trooper!  Ben brings love and joy to those he meets.  Ben gives amazing cuddles, and his mom looks forward to their “treasured cuddle time.” Ben is a curious boy who loves to play with trains, computers, puzzles and videogames.  Dubbed “Puzzle piece kid,” Ben can master puzzles right-side-up or up-side-down!  WOW!  Mom says, “Ben is Ben, and he is the best!”


Doctors have been left baffled at times, researching and testing Benjamin, looking for a fitting diagnosis that best describes his needs, as well as the treatment and support that will support his needs.  Multi-challenged, ADHD, global delay and autism spectrum are just a few of the diagnoses that have been discussed at this point.  However, there is no cookie cutter diagnosis that fits right now.


At just two years old, Ben has endured and struggled with epileptic seizures.  They are investigating his seizures with hopes that they will be able to suppress them in the future, but there is much fear and uncertainty of the damage that these seizures have already caused.  To have some control of the seizures and to ultimately be seizure free would be a gift. 


Heartbreaking struggles and the feeling of helplessness overwhelm Mom on a daily basis.  However, there are always reasons to celebrate his success and growth.  Despite the challenges Ben faces, he conquers each day and brings sunshine to those who know and love him.  Mom knows that Ben is in her life for so many reasons.  Ben’s journey has made his mom a stronger person, and has given her the firm belief to learn, read, educate yourselves, seek support and advocate for your child. 


Story by:  Leah Nahirnick

Jack's Story

Images Captured by Haley Lorraine

Meet Tiny Light Jack.  This three-year-old is a huge ‘Bob the Builder’ fan who loves going walks, playing and running in the park, listening to music, and, most of all, being in the company of others.


Jack was diagnosed at 18 months of age with Autism after his parents noticed that he was not responding to his name, was losing motor skills, and did not seem aware of the people and activities happening around him.  His parents, Allison and Craig, struggled with “not knowing how severe it may get....not knowing if ever he would be able to ride a bike, have friends and play like any other child his age... to still live in uncertainty as to his outcome.”  But they keep hope alive, take the good days with the bad, and have learned much about “patience, kindness, gentleness, and self-control...but ultimately true love.”


In their efforts to support Jack as best they can, his parents have learned so much, such as surrounding themselves with positive people, keeping hopeful, and never giving up.  They hope for Jack to have a chance at doing everything that other kids his age get to experience, such as going to school and having positive relationships with others.  Allison and Craig are inspired in their daily lives by a quote: “Love bears all things, believes all things, hopes all things, endures all things.” 

Miranda's Story

Images by Jenn Di Spirtio

When you look at Miranda and see her positive attitude, you would never guess the trials she has endured.  Multiple medical diagnoses and life circumstances should have knocked her and her mother, Tamara, down; instead, those same circumstances have created a world of opportunity. 

At birth, Miranda was diagnosed with a Posteromedial Bow in her left tibia and fibula, in addition to a leg length discrepancy. Her leg has been re-shaped and lengthened 7 cm through ten surgeries and an Illizarov Frame. As if that was not enough, Miranda’s dad passed away from a heart attack caused by Familial Hypercholesterolemia (FH) leaving Tamara as a single mom. Since FH is a genetic disorder, Miranda was tested and was found to have the same condition.  When Miranda was in grade six, she developed a kidney stone as a result of Hypercalciuria, a condition that causes excessive calcium excretion.  On the journey to finding out what was making Miranda so sick, she was also diagnosed with Pectus Excavatum (a Latin term meaning hollow chest) and scoliosis (where a person’s spine is curved from side to side).  She is currently awaiting an echocardiography to determine the severity of her newly diagnosed Mitral Valve Prolapse (the displacement of an abnormally thickened mitral valve leaflet into the left atrium during systole). 

Despite her multiple diagnoses, Miranda is fearless and continues to swim, write and enjoys art and school.  Her favorite subjects are Science and English. She has recently signed up for a yoga class with her friends, and is looking forward to it. 

Tamara’s advice to other parents going through the same thing is that even though you expect your child to be perfect and healthy, once you start down another path, you deal with it and it becomes part of your life. Miranda says that she finds it hard when everything seems to happen all at once and her illnesses start to interfere with her normal life.  She would like to let other kids with similar conditions know that it helps to talk to people, be around friends, and stay positive. 

Miranda is an inspiration to her mother because she is actually thankful for her many physical conditions! Because of her long stays in hospitals and exposure to the medical field, Miranda is medically inclined and has built a network of many types of people. “She was recently invited to speak to the nursing students at BCIT … to discuss her experiences and how nurses can have a positive approach towards their pediatric patients,” says Tamara. Perhaps one day, she will even become a pediatrician herself!

Miranda has written a guest blog for us it can be read here