Charlie's Story

Image Captured by Light on Paper Photography

Tiny light Charlie loves to play with crinkly toys, roll around on the floor, and play in his jolly jumper.  He also loves to eat!  His smile is infectious and despite the challenges he has faced in the first few months of his life, Charlie has remained strong and happy.

The day after he was born, Charlie’s doctor noticed a heart murmur, and testing revealed a Ventricular septal defect, anAtrial septal defect, as well as Tetralogy of Fallot (TOF).  These heart defects resulted in Charlie going into congestive heart failure shortly after he was born.  Initially, his parents were told that he would require surgery at approximately six months of age.  However, after ten weeks he had barely gained two pounds, even though he was on high calorie formula and a feeding tube.  It was determined that he would need surgery earlier than expected.  At just 12 weeks, surgeons repaired his heart, and the surgery was a success!  He is still small but should develop into a healthy little boy.  He will require yearly visits to the doctor until he is five years old, but should not require any further surgeries.

Charlie’s parents have some advice for others facing similar journeys: “Although it is incredibly hard and you don't know what is going to happen, you have to stay strong, do your research and be prepared.  Ask questions and find others who are going through the same thing.  Join groups for support and stay positive.”

Story by Emily Harrison

Emma's Story

Images Captured by Simply Rose Photography

Meet Tiny Light Emma. This sweet little girl loves cuddling and spending time with her family. She has already been fishing and camping on the Skeena River!

At a 28 week routine ultrasound, Emma was diagnosed with Down Syndrome and an Atrioventricular Septal Defect (AVSD). This means she was born with holes between the top two chambers of her heart and the bottom two chambers of her heart. Emma had heart surgery on December 5, 2011 and it was a success! She will be followed by a cardiologist for the rest of her life and may or may not require additional surgery to further repair or replace a valve in her heart. So far, Emma is meeting all of her milestones and bringing so much joy to her family.  

Emma’s parents are overwhelmed by the incredible support shown by their family, friends, and others in their community. In her mother’s words: “family do more than they should because they love us...friends really do care...and strangers can be a great source of support and encouragement.” They hope that Emma will continue to touch and inspire those around her. “She has already shown us that we need to slow down and live in the moment.  So much of our life is out of our control and every moment has the potential to be so precious.”

Story by Emily Harrison

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