This is what little Ethan Dean’s typical day looks like.
He spends 10 to 15 minutes in the morning breathing in mist from a machine called a nebulizer. Then he puts on a mechanical vest for 20 minutes that shakes his chest, trying to break up mucus in his lungs. When he eats, he takes enzymes to help him digest his food. And he repeats the vest routine before he goes to bed.
He’ll do all of that Tuesday. But the rest of his day is going to be anything but typical.
And that’s where you come in.
Ethan Dean is 6 years old and is battling cystic fibrosis, a genetic disease that causes severe damage to the lungs and for which there is no cure. Like a lot of little boys his age, he has strong opinions about what he likes and what he wants to be when he grows up. Ethan wants to be garbage man.
The Make-A-Wish Foundation has teamed up with Randle Communications and Waste Management to make Ethan’s wish come true for a day. So on Tuesday, Ethan will ride through midtown and downtown in a Waste Management truck, stopping at five spots along the way to pick up trash and recyclables.
Here’s his itinerary:
▪ The Sacramento Bee, 2100 Q St., at 10:25 a.m.
▪ Fire Station No. 2, 1229 I St., at 11:00 a.m.
▪ Cal-EPA building, 11th and I streets, at 11:20 a.m.
▪ Frank Fat’s Restaurant, 806 L St., at 11:55 a.m.
▪ State Capitol west steps, 1315 10th St., noon
The event organizers would love to see people lining I Street as Ethan’s truck moves downtown, cheering the little guy on. They’re also hoping for a big crowd at the Capitol, where Mayor-elect Darrell Steinberg and Police Chief Sam Somers will honor Ethan.
And if you know Ethan Dean of Rancho Cordova, please don’t tell him about the plans. He has no idea what’s about to happen.
“He’s just always loved garbage trucks,” said his dad, Ken.
Ethan was two weeks old when his parents were told he had been diagnosed with cystic fibrosis. Ethan was hospitalized with bronchitis twice during his first two months. He spent another couple of weeks in the hospital when he was 2 years old with an infection. He hasn’t been hospitalized since, other than spending a night in care after he had his tonsils out a few weeks back.
Every few months, Ethan goes in for a “tune-up” at Kaiser Permanente Medical Center, Roseville, where his lungs, breathing and blood are tested by a team of doctors.
“He’s so used to it, it’s no longer an issue,” Ken said.
One of the odd things about cystic fibrosis – especially in the case of this 6-year-old boy – is that you often have no idea someone is battling it. Ethan plays soccer, he swims and he’s obsessed with “Star Wars.” He has lots of friends and just started first grade.
Ken and his wife, Erin, know their little boy is about to move into a stage of his life when a lot of things aren’t going to be so simple. There has been enormous progress in the treatment of cystic fibrosis, but Ken and Erin haven’t talked to their son about the fact that most people with the disease don’t make it to 40.
“You kind of don’t want to rob him of that innocence,” Ken said. “But at some point he’s going to pick up on it. As a parent, it’s that dark cloud chasing you and you’re doing everything in your power to push it away.”
The cloud isn’t here yet. And for a couple of hours Tuesday, we can all do our part to help push it away.