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