This is a nice little ESPN piece about Ethan and his illness.
The best part of the whole article:
"Ethan shows no obvious signs of having the disease. He's an active, athletic little boy, who greets visitors to the family's home with a smile and bubbling personality. He played baseball this summer on a 7- and 8-year old team and was the team's third-leading hitter. He spends most afternoons playing Whiffle ball in the front yard or swimming in the family's pool."