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I challenge #StevenSpielberg, #HelenMirren and @DayalManish. In the name of ALS...

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The most stunning moment for Julie, she said, was when Bill Gates, the world’s richest man and powerful philanthropist, joined in.

“It’s like, ‘Holy smokes, that person did it, this person did it,’ and the next think you know … your whole news feed is just Ice Bucket Challenges,” added Pete Frates’s best friend Tommy Haugh.

In just six weeks, the Ice Bucket Challenge had raised almost a quarter of a billion dollars. But as ALS research progressed, Pete Frates's body continued to decline.

He now breathes through a ventilator, which keeps him alive. It was a difficult decision that doctors say only 10 percent of ALS patients chose to make.

As a result, he has around-the-clock care with a private nurse. His parents said the medical bills are around $90,000 a month.

Just this summer, his family thought he was going to die, but a change in medication helped stabilize him. Ever determined to prove he’s a fighter, after the scare, he posted a video of himself listening to Pearl Jam’s “Alive.”

in the words of my friend
ed pic.twitter.com/g7iIR4rfmT

— Pete Frates (@PeteFrates3) July 3, 2017

He still has a lot to live for. His daughter, Lucy Frates, is now 3 years old. He talks to her through a voice-activating feature on his computer.

“He's so madly in love with her. She's the light of our lives,” Julie Frates said. “It's funny because she's never known Pete in another state. Pete's always been in a wheelchair. He's never spoken to her with his voice. He's never picked her up, he's never run around with her. So this is Dad to Lucy.”

\"Pete
Courtesy Frates Family
Pete and Julie Frates are seen here with their daughter Lucy in this family photo.
>

Pete Frates’s story is now the inspiration for a new book by best-selling author Casey Sherman, called “The Ice Bucket Challenge: Pete Frates and the Fight Against ALS.”

“Before this happened to him, his life didn’t have the purpose that he wanted it to have,” Sherman said. “And when this happened, he realized before anybody did that this was his mission, this was his purpose in life was to be the face of this dreaded disease and find a cure for it.”

As a result of the money that was raised, a new drug was fast-tracked and made available. Several others are in clinical trials.

“I think that is for sure what the Ice Bucket campaign did,” said Dr. Merit Cudkowicz. “It brought in all these great biologists, engineers, people who never thought about ALS, into the ALS field.”

What Pete Frates was able to prove, his family says, is that one person can change the world.

“Pete said to us … ‘Everything that we do is probably not going to be in time for me, but it's going to be time so other people will never have to have this happen to them,’” said his mother, Nancy Frates.

Osiel Mendoza, 22, is one of the countless patients who may benefit from the new ALS treatments. He was one of the millions who took the Ice Bucket Challenge, though at the time, he had no idea ALS was about to change his life.

Like Pete Frates, Mendoza was an all-around athlete and team captain, now living with his middle school sweetheart, Bella Gonsalves. Last summer, he started to notice a change in his body. He underwent a series of tests and was diagnosed with ALS.

“My whole entire life flashed by me,” he said.

\"Osiel
Courtesy Osiel Mendoza
Osiel Mendoza is seen here with his wife Bella Gonsalves in this undated photo.
>

Now less than a year after being diagnosed, Mendoza has to use braces to walk. When his right hand became too weak, he learned to write with his left. But with the advancements in ALS research thanks in part to the Ice Bucket Challenge, Mendoza might have more time than others diagnosed before him.

Just three days before his ALS diagnosis, he had asked Gonsalves to marry him. The two were originally going to be married in 2018 but said they moved the wedding up to this month after Mendoza’s diagnosis.

“I’m here until the end,” Gonsalves. “I’m never going to leave your side.”

The disease makes it hard to stand for too long, but Mendoza was determined to walk his new bride down the aisle. Together, they shared their first dance -- a graceful act of defiance in the face of a disease that steals almost everything.

If he could talk with Pete Frates, Mendoza said he would tell him, “thank you.”

“Thank you for everything that he has done and for the inspirations that he’s given me and many other people with ALS that there’s hope,” he said.

Pete Frates and his wife continue to fight for every day for their love, and for their legacy.

“She is his legacy,” Julie Frates said, referring to their daughter. “For us to have this little person that’s half of us is amazing, but she’s so Pete in so many way, which is amazing for me.”

ABC News' Zoe Lake, Sally Hawkins and Lauren Effron contributed to this report.

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