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Bucks County, Pa. (WTXF) - Two years ago, a Bucks County father's world started unraveling. He went from a 49-year-old devoted husband, active father of six to terminally ill. The once vibrantly healthy man lost almost all his abilities except the will to live and to fight.
FOX 29's Joyce Evans introduces us to Frank Mongiello and his fight for the "right to try".
"It started with my legs and I slowly became unable to walk or move my legs in bed."
A machine controlled by eye movements now speaks for him.
"It really agonizes me to watch him lose the ability to talk, lose the ability to move his legs, to move his arms," his wife, Marilyn, said.
All this happening in just a matter of months.
"I'm not afraid to die but i want to fight for my life," Frank said.
Working, fighting , competing is what Frank Mongiello knows best. A government job that took him around the world, competitive bodybuilding and coaching. Keeping up with an equally athletic wife and now six very active kids who had taken him on the ride of his life all by his mid 40's.
Then, he was diagnosed with ALS or Lou Gehrig's disease .Breaking it to his kids was the toughest.
"He looked at all of us and said, 'I'm gonna fight like hell," Marilyn said.
They jumped right in with him so did friends, neighbors, business communities local and national.
Insurance coverage -- a drop in the bucket compared to the extraordinary cost of managing what can be a drawn out terminal illness.
"Family, friends and the community are vital to keeping my spirit high -- my wife, Marilyn, my children, Ilyssa, Eric, Alexis, Samantha, Zack and Zoe have been my rock," Frank said.
When they are not attending to their dad, caring for his needs, keeping him comfortable or just loving him up at home they are on the road -- backing up Frank's fight to get a federal law passed - allowing terminally ill patients the "right to try" medicines, treatments and devices that may help but are not yet approved by our Food and Drug Administration.
His son's Eric and Zack got Mike Pence's attention last summer at an emotional townhall meeting in Lancaster.
As Indiana governor Pence enacted one of dozens of the state versions of the "Right to Try" act . Neither Pennsylvania, New Jersey, nor Delaware are on that list yet. The Mongiello's hit Capitol Hill working congress gathering signatures. Frank got an invite to hear the president speak in favor of it.
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