Bentlee’s Story

Bentlee was born with transposition of the great arteries. His parents had no clue he had heart defects until he was born. He was quickly transferred to STL to be admitted and scheduled for open heart surgery. The Smiley family relocated to STL (3 1/2 hours away from home) and lived at the hospital for about a month while he received surgery and healed.

At the age of 2, Bentlee was diagnosed with a primary immunodeficiency called CVID, where his body doesn’t create antibodies to protect him from infections. He receives intravenous immunoglobulin replacement therapy every 4 weeks in St. Louis, due to the area where they live not having the capability of infusing the medication locally. Bentlee has currently been on treatments for 3 years, but he will more than likely require them lifelong in order to live a normal life doing ordinary things. Battling the ongoing appointments, extended frequent travel, and side effects these treatments bring has been a stressor in the Smiley family’s life for some time now. Despite it all, Bentlee remains such a joyful light! He loves the Cardinals baseball team and his parents always remind him that God has good plans for his life. These things inspired his fun shirt!