INDIANAPOLIS - A seven-year-old boy from Indianapolis was there watching on as newly confirmed Education Secretary Betsy DeVos took the oath of office Tuesday.
Jordan McLinn, who became the face of the "Right to Try" bill in Indiana, flew to Washington D.C. to meet with Vice President Mike Pence.
Jordan and his family have taken a very personal fight, all the way to our nation's top lawmakers. The seven-year-old and his mom, Laura, flew into the Indianapolis International Airport Tuesday night, after a whirlwind trip that also included testifying Monday at a congressional briefing and meeting an old friend, who is now vice president.
Jordan was all smiles as he shared the joke he told Vice President Pence.
"The joke was, 'Why did the banana put sunscreen on?' So he wouldn't peel," Jordan said laughing.
Jordan is no stranger to the Vice President.
Two years ago, he was at then-Governor Pence's side when the governor signed the "Right To Try" law in Indiana, which gives terminally ill patients the right to try experimental drugs that could save their lives.
Jordan is one of those patients. He's battling a deadly disease, muscular dystrophy, not to mention time.
"Over time, they lose all their muscle function and usually their heart is the last to go," explained Jordan's mom Laura.
That's why Jordan and his mom have made several trips to Washington over the past year to lobby for a national "Right to Try" law.
Indiana is one of 33 states that have similar laws on the books.
"The problem is, the FDA is a federal agency, so you need a federal law to support those state laws," explained Laura.
The law didn't pass last session, so the first grader and his family went back to Capitol Hill this week, meeting with several lawmakers like Senator Joe Donnelly (D-Indiana), to keep voicing their message.
The McLinns are hopeful it's being heard.
"The vice president told us that he is very supportive still of the legislation now that he's the vice president, which is huge," said Laura. "He told us tonight that President Trump is very supportive and that's he's very passionate about it. He told us tonight, 'I'll see you at the signing'," Laura said.
She certainly hopes so, both for her son and others who are in the same fight for their lives.
"I really think he's destined to do great things and I think he's changing lives," said Laura of her son.
It would certainly seem so. Jordan, who once dreamed of becoming a firefighter and was made an honorary one by the Indianapolis Fire Department, has now turned lobbyist, with other dreams on the horizon.
"I would like to be the President of the United States," said Jordan.
But first, Jordan's family dreams of giving him a fighting chance. Jordan's set to go through a screening next week to start taking an experimental drug in March which will involve weekly trips to Chicago.
