Bucks County dad with ALS heads to Washington D.C. for 'Right to Try' Act decision

- A Bucks County family is gearing up to head to Capitol Hill  for a decision expected Tuesday on the 'Right to Try' Act. If the bill passes terminally ill patients would be able to try experimental practices and medicines that are not yet approved.

"I think it's the first time I've had butterflies." A smiling Frank Mongiello is just hours away from hopefully making history. A milestone Frank thought he probably wouldn't live to see.

Marilyn and Frank have come a very long way since we first met them and their 6 children 14 months ago.

READ MORE: Bucks County father fights to live

"I want to be able to look my wife and kids in the eye and say we did our best," Frank said.

Frank hasn't stopped fighting even as ALS ravages his body—his eyes control a machine allowing him to still speak.

"I drew my strength from my family and we are in it to win it," he said.

The family has pulled together tending to Frank needs while the whole family has hits the road lobbying lawmakers from townhall meetings to Harrisburg and all the way to Washington D.C.  

It's been an emotionally trying time fighting for all terminally ill patients— like Frank—to have a right to try medicines, procedures and devices not yet approved by the FDA.The law has since been passed in Pennsylvania and New Jersey, the US Senate approved it as well. President Trump vowed he'll sign it has soon as Congress approves.. That could happen as early as Tuesday and the Mongiellos will be there

"It a tense moment, but I feel we're at the finishing line. I feel this is going to be it," Marilyn said.

"Unfortunately, with today's contentious Congress I really won't celebrate until after President Trump signs the bill," Frank said.

 That could also happen this week and Frank would be here to see that happen.

"Unfortunately, some of our friends have already passed away so it's also for them," he said

"More people trying experimental drugs and it will give them more information to try to get the right drugs for the cure," Marilyn said. 

Frank and Marilyn are hoping to try a couple treatments immediately. They don't expect to save his life, but to improve the quality of the life he has left.

"While there is breath there is hope," Frank said.

               

 

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