Madison's Story

Images Captured by D4 Photography

Meet Tiny Light Madison, a two year old girl with an inspiring smile and a love for singing and dancing.  She loves to spend her time playing with her pet bunny, learning new words, reading with Mommy and Daddy and playing at the park. 
At only nine days of age, Madison was diagnosed with Congenital Adrenal Hyperplasia (also known as CAH or 21-Hydroxylase Deficiency).  People with CAH are missing an enzyme the adrenal glands use to make cortisol and aldosterone.  Both of these hormones are very important for survival. Cortisol is produced in times of stress; without it, people go into shock very easily.  This is referred to as an Adrenal Crisis.  This condition can be managed but becomes a problem in times of sickness and injury because our bodies would normally produce extra amounts of these hormones. 
Madison’s parents were terrified upon hearing the diagnosis.  They had never heard of CAH, and it all seemed so overwhelming.  “The thought of having to keep up with these medications and not messing them up was so scary. We were scared to tell anybody, we thought nobody would understand.  We were also scared about our daughter's future.”  However, Madison has responded very well to her daily treatments and is thriving.  But as the parents explain, “the hardest part has been the constant fear of Madison getting sick or hurt and having an Adrenal Crisis.  Although she has not had one yet, it is inevitable that one day she will and we always need to be prepared for it.”
The future looks bright for this Tiny Light, as she should be able to lead a healthy, happy life with the help of medication and careful treatment of illness and injury.  As long as she is careful, Madison will be able to accomplish whatever she puts her mind to.  Her parents dream of Madison growing into a very happy, well-rounded person, who goes for what she wants in life.

Story written by Amber Grant

Giana's Story

Images Captured by Dawnette Walters Photography

When Tiny Light Giana smiles it lights up the whole world. For parents Michael and Shelley, that ray of sunshine is reason enough to get up each and every day. 


Giana was nearly six weeks old when her mom and dad found out she had several serious medical issues. She was diagnosed with isolated lissencephaly (Type 1), also known as “smooth brain”. It’s a rare disorder resulting in a lack of development of brain folds and grooves. This means Giana will only function at the level of a five month old baby. She also has microcephaly, or “small brain”, so her head is much smaller than the average three year old. Giana needs to be on a ventilator to assist with breathing and she is on a number of medications for a seizure disorder.


At first, her parents were devastated and angry. Then one morning, they woke up and realized Giana is the most precious gift they could have ever received. “Giana is our light, our world. We cherish every moment we have with her.”


Though her activities are limited, Giana loves getting attention. She enjoys bath time and music. But if she is annoyed at her twin brother Dominic, she doesn’t hesitate to let him know by rolling her eyes.
Doctors aren’t sure what is in Giana’s future. The family is taking it one day at a time and already, this beautiful Tiny Light has surpassed the odds. “Live life to its fullest. Realize that you have to live every day like it’s your last.”


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 

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

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

Kayden's Story

Tiny Light Kayden could be Lady Gaga’s youngest fan. He’s not even 3 years old yet, but he would make the superstar proud – behind the beautiful smile, this little boy has a thing for shoes. Every time he goes into a store and sees shoes, he wants a new pair!

Kayden has already defied the odds. He has a very rare complex congenital heart disease called Right Atrial Isomerism. His heart has five defects including a large hole between the chambers, and he was born with no spleen. Kayden was diagnosed at the 20 week ultrasound, heartbreaking news for first-time parents Jennifer and Steve.  They were told only two children a year in Canada are born with this condition. The survival rate is 50%.

Though doctors are unsure of Kayden’s future, he is healthy right now. At 8 days old, he underwent risky open-heart surgery. Just a week and a half later, his mom and dad took him home. “He has been through so much but always has a smile on his face.” Kayden is on daily medication for his heart and to fight infection due to having no spleen. He will need another open heart surgery within the next year.

This Tiny Light is too young to understand his heart issues, but his mom and dad tell him he has a special heart. Kayden isn’t letting anything slow him down – he loves playing outside, or having fun with his toy cars and tricycle.  “I hope he lives a good life no matter how long it may be.”

Written by Elaine Yong