I've been doing Extra Life for three years now. My friend, Lora, was working hard and promoting the KC Guild. I couldn't help but get sucked into it eventually. I love to game and my first daughter was even named Zelda, and my second child Alleria, named from World of Warcraft.
At time of my recruitment I was freshly dealing with Alleria's illness. You see, my daughter was born November 9, 2014 with three holes in her heart. They spotted only one before she was born and we were informed it was nothing to worry about because many ventricular septal defects (VSD) close on their own and most go unnoticed.
Unfortunately, the biggest hole that was the VSD was not the problem, nor was the tiny atrial septal defect. Patent ductus arteriosus (PDA) was the problem. That hole is something we are all born with and it closes after birth. Alleria's hole did not. Other than the fact that she wouldn’t sleep, she seemed just like a normal baby for the first couple weeks.
It got worse, she started screaming and suffered weight loss. She was failing to thrive. Four weeks after she was born the doctors knew this was a problem. I won't lie for a while I couldn't take pictures. I didn't want to remember how thin she was. Her chest would sink in as she was breathing, she had to be at an incline to sleep, and she cried non-stop.
I was devastated and I felt like I had somehow failed a parent. I was going between two hospitals and one began saying that I just must be starving my child. They didn't want to listen to the children's hospital literally across the street.
I ditched the normal hospital angry and hurt. The children's hospital told me to stop breast feeding and to start giving her bottles with extra scoops of formula. I was fattening her up so that they could perform the best possible procedure.
She was lucky. By the time of the procedure, she was in heart failure, her heart taking up ¾ of her chest cavity. Without that procedure she wouldn't be the curly haired little cutie she is today. She isn't doctor free at this point. The VSD is still slightly open and she has an abnormal aortic valve with mild stenosis, and possible COA. It seems like a lot but it isn't affecting her quality of life at this time and she is running around like a mad woman.
I can't imagine what my life would be like without the people and the doctors who supported me during this time. So when I learned of Extra Life I needed to be a part of this. My child might not have been seen at a Children's Miracle Network Hospital but that does not matter. What matters is giving back so that the love and care that my family got will reach those families who need it. I am part of the Kansas City Guild and I play for children just like mine at KU Pediatrics.