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

Tiny Light Journey

Images Captured by Jennifer Kapala Photography

Tiny Light Journey has the perfect name because his first few months of life have already been quite the journey. Doctors gave him only a one in five chance of surviving past the first few days and now he is already five months old.

The diagnosis in utero of Tetralogy of Fallot (a heart defect) and an extremely rare genetic disease - Diamond Blackfan Anemia (DBA) - was devastating for parents Doug and Coreina. Journey arrived early at 33 weeks after an in utero transfusion procedure put his mom into labour.

Since then, this tough little baby boy hasn’t stopped fighting. He spent his first two weeks of life in the NICU and then he was transferred to the PICU. There have been countless tests, procedures and medications, with heart surgery in the future. He is surrounded by so much medical equipment so any cuddling time is very precious.

Most patients with DBA suffer severe chronic anemia due to bone marrow failure. The condition can sometimes be managed with intensive drug therapies or repeated blood transfusions – both options have multiple potential side effects. The only cure for DBA is a bone marrow transplant, also fraught with risks and complications.

While the family continues to hope there will be a cure for DBA one day, they are learning to appreciate the simple things in life. Tiny Light Journey has brought so much, “We realize what a great family we have and just how strong we are together. We know that with each other, we will all make it through this journey.”

Written by Elaine Yong