It's been nearly seven years since 50-year-old Steve Posso was diagnosed with ALS, also known as Lou Gehrig's Disease.
"I beat the odds. That's what they say," Posso says.
When he started losing strength in his right leg, he knew something wasn't right.
"I was getting worse," he said. "I couldn't stand. I would fall."
Posso says he knew enough about the disease to know what it meant.
"I knew it was terminal. I knew no one got out."
In the years since his diagnosis, Posso has helped put a face to the disease, raising more than $100,000 for research.
He's also refused to let ALS diminish his appetite for adventure.
He's surfed, he's skied and he's even jumped from a plane.
But from the beginning, his now 13-year-old son Joseph was always on his mind with Posso wondering how he was dealing with his dad's illness.
Joseph says it was something he didn't really comprehend at first.
"OK, what does it do? I didn't really understand at the time."
Posso realized there were probably lots of children like Joseph who were confused about what was happening.
"I saw a need for children that all the attention was put on patients," he says.
So father and son created Posso's Posse - a program within the ALS Association, Arizona Chapter - that provides child life specialists to work with children of ALS patients.
"It really helps other kids. It gives them a line of support with other kids who don't know how to cope and they can help the other kids while their parents are going through the phases and stages of ALS," Joseph adds.
That's a reminder for those children, Posso believes, that they're not alone.
"ALS is not a very pretty disease," he says. "We cannot forget about the kids."
Click here for more about Posso's Posse and the Scottsdale Walk to Defeat ALS.
Monday, July 28 2014 1:54 AM EDT2014-07-28 05:54:28 GMT
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