When Josh was first born, his heart stopped, and he was sent to the hospital’s upper nursery. A day passed, bringing no improvement in his breathing.
We were transferred to Children’s Minnesota, arriving at 10:30 pm and learning at 3 a.m. the following morning that Josh had single atrium, single ventricle Total Anomalous Pulmonary Venous Connection (TAPVC), a rare congenital heart defect. Josh was also diagnosed with D-Transposition (his heart’s aorta and vena cava were switched from their normal positions) and Dextrocardia (which means his heart was situated on the right side of his body instead of his left).
Josh received his first open heart surgery just four days after he was born (correcting the transposition) and a second at just ten days old. He was on a ventilator until he was 18 months. A stomach tube was attached to his stomach until he was almost 2 years old. At 7 1/2, he underwent a third heart surgery.
Doctors told us Josh wasn’t going to make it to six weeks--but here we are and here he is still going strong at 13!
Despite these triumphs, Josh remains affected by his illness. At 13, he is only four feet tall. He is limited at what he can do in certain aspects. When it’s cold, he can’t go outside because of his breathing difficulties. The same is true when it’s humid. He got picked on at school so much, that he has begun attending school online.
I first learned about Starlight while surfing the web and applied for Josh to become a Starlight kid. A year has passed since then, and through Starlight’s Great Escapes program, we’ve attended two football games, a hockey game and various baseball games. Josh has a fantastic time at these events, so much so that his interest in sports—in particular, hockey, football and baseball—has grown tremendously.
Starlight has helped introduce Josh to the world of sports. His breathing problems may keep him on the sidelines, but participating as a spectator makes him happy enough. Sports have allowed him to better “bond with the guys” and that’s the sport that I like see.
My son Josh is one of the most special kids you could ever meet. We have a bond that most children and parents don’t share. It’s my goal in life to make sure Josh has as many experiences as he can while he is here with us. Starlight is part of making that happen, and I cannot thank you enough for that.
- Michelle, Starlight Mother