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

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

Kaden's Story

Images by Adelle Munk

The Tiny Light foundation is saddened by the loss of a very special Tiny Light.  His story had not yet been published, but we would like to honour him by sharing his story.

Tiny Light Kaden was a typical teenage boy; he loved video games, his dreams were bigger than life, and he was quite the flirt.  He loved his family deeply with utmost devotion.  He was selfless and gentle, loving and generous.  Kaden was a torch bearer for the 2010 Vancouver Olympics and had received his learner’s permit, both exceptional accomplishments that he was extremely proud of.  However, Kaden’s life was anything but typical; he had been through more in his sixteen years than most people go through in a lifetime. 

Kaden was born at 37 weeks gestation on May 27^th, 1995 at BC Children’s Hospital.  He was diagnosed with Pulmonary Atresia with VSD (a hole between the ventricles), and after multiple surgeries to try to correct his pulmonary blood-flow, he also developed secondary pulmonary hypertension. Mom Jennifer was given the devastating news by the doctors that Kaden was not expected to live beyond infancy. 

Although Kaden exceeded the expectations of his medical team, he had a tough fight.  After three open heart surgeries, many medical procedures at BCCH, and a life rich in love, warmth and kindness, Tiny Light Kaden lost his battle on September 1, 2011 surrounded by his loving family.  Kaden’s poor body just did not allow him to have the long life he and his family so hoped for; he was in the final stages of his heart disease and was battling heart failure and dyspnea when he passed.  Before his passing, his mom said, "My hope and dream for my Tiny Light is that he find peace always, and wherever he plays after he leaves us, that he is able to [continue] his journey … in good company with a great sense of humour.”  Peace is what they dreamt for him ... peace is what he now has.

In the words of Kristin Chenoweth,

“They shine a little brighter, they feel a little more 

They touch your life in ways no one has ever done before 

They love a little stronger, they live to give their best 

They make our lives so blest, so why do they go so soon? 

The ones with souls so beautiful 

I heard someone say-- 

There must be Borrowed Angels, here in this life 

They come along, into this world, and make this world bright 

But they can't stay forever 

Cause they're heaven sent 

And sometimes, heaven needs them back again.”

I feel blessed that I was able to meet this Tiny Light ... this Borrowed Angel.  On behalf of the entire Tiny Light Foundation, our thoughts and prayers are with Kaden’s family.

By Adelle Munk