President Donald Trump hugs Duchenne Muscular Dystrophy patient Jordan McLinn after signing theRight to Try act in the South Court Auditorium on the White House campus. Photo / AP
President Donald Trump hugs Duchenne Muscular Dystrophy patient Jordan McLinn after signing theRight to Try act in the South Court Auditorium on the White House campus. Photo / AP
An eight-year-old boy who helped inspire federal legislation giving the terminally-ill the "Right to Try" experimental drugs stole the show on Wednesday at a bill signing event.
The boy, Jordan McLinn, of Indianapolis, Indiana, left his wheelchair to stand at the president's side as Donald Trump inked his name to the legislation.
While the president was passing out signing pens to the event's participants, the boy repeatedly went in for a hug. After several attempts the president rewarded him with an embrace and a kiss, according to the Daily Mail.
Boy waits patiently as President Donald Trump signs the Right to Try act in the South Court Auditorium on the White House campus. Photo / AP
He also gave McLinn the pen he'd just used to sign to the act that passed three years ago in Indiana after a lobbying campaign led by the boy's mother, Laura, who was also present.
As Trump delivered his remarks in the Eisenhower Executive Office Building's South Court Auditorium, he gave McLinn a special acknowledgement.
Trump told the audience that included several lawmakers who were instrumental to the bill's signing, "If I had that face. If I had that head of hair, I would have been president so long ago. That's great."
President Donald Trump hands a pen to Jordan McLinn, a Duchenne Muscular Dystrophy patient, after signing the Right to Try; act in the South Court Auditorium. Photo/ AP
President Donald Trump hugs Duchenne Muscular Dystrophy patient Jordan McLinn after signing theRight to Try act in the South Court Auditorium on the White House campus. Photo / AP
Jordan McLinn suffers from Duchenne Muscular Dystrophy (DMD), a fatal disease that typically confines the afflicted to a wheelchair by age 12 and takes their lives on average at age 25.
His mother, Laura, has said in news accounts that three years ago, in 2015, when Jordan was five, they heard about the Right to Try law.
At the time, Jordan didn't qualify for a clinical trial. She brought him to the statehouse in Indiana and lobbied state lawmakers to pass Right to Try.
Vice President Mike Pence, then the governor of Indiana, signed the bill in 2015 with Jordan at his side. The family later found out that because the FDA is a federal agency, its takes a federal law to give patients the approval they needed to access experimental drugs.
President Donald Trump kisses Jordan McLinn, a Duchenne Muscular Dystrophy patient, after signing the Right to Try"act in the South Court Auditorium on the White House campus. Photo / AP
President Donald Trump talks to Jordan McLinn, a Duchenne Muscular Dystrophy patient, after signing the Right to Try act in the South Court Auditorium on the White House campus. Phto / AP
In the meantime, she says, Jordan made it into a clinical trial and started accessing a drug that they believe is slowing the progress of his disease, she said in a March video created for House Republicans.
"I'm pretty excited that there's finally going to be a vote," she said in a promotional video for Majority Leader Kevin McCarthy.
The president today recalled that he endorsed Right to Try earlier this year in his first State of the Union.
"Patients with terminal conditions should have access to experimental treatment immediately," he said in the address before a joint session of Congress.
