These days, Josh is your typical seventh-grader. He has great friends, fights with his little sister, likes videogames and loves to play baseball.
What's not typical is that in his first four years, he had three open-heart surgeries. ... And it's not over yet. He is scheduled to have his fourth procedure in the next few months.
Josh's parents knew before birth that something was wrong. They prepared for it as best they could, but ultimately, the doctors would not know the course of action until after he was born.
About 12 hours after he was born, Josh was in surgery. Because the surgery was so risky, he was placed on frozen bypass, which meant that for a limited amount of time, his body temperature was brought down below freezing temperature -- 32 degrees Fahrenheit.
Fortunately, the five-hour surgery was a great success. However, his heart was also in worse shape than they’d expected; his aorta was so tiny, it was rendered unusable. It was the size of a thumbnail. Surgeons had to be creative, altering his pulmonary valve to make it function as his aorta. They also then implanted an artificial valve to serve as his pulmonary valve.
Even at such a young age, Josh fought hard to recover, and was discharged after nine days -- more than a week ahead of schedule.
The doctors believed his artificial valve would last until he was 2 or 3, but Josh's body rejected it, and at 8 months old, it was replaced. It was then replaced again when he was 4.
But with each surgery, he proved his doctors wrong – leaving the hospital just days after surgery, not weeks.
Despite the many obstacles, Josh is lucky and happy. He has incredible physicians and great support around him. He's also fortunate because of the advancements in medicine. That's due, in part, to the money raised for research and development. Without it, there's no doubt Josh would not have survived after the first 24 hours.
Since he was old enough to understand his history, Josh has been steadfast in his goals and decisions to raise money and awareness for research to help other children. His hope is that someday enough money will be raised to find a cure. It's his greatest wish.
As Josh has grown older, he now has an additional mission: to help support other kids with whom he shares this history.
Josh wants to grow the Strike Out CHD! community to become an online home for fundraising, education and a place for other children like him to ask questions, talk or just share stories.