tonight on a special edition of "nightline." you did it. they did it. superman and oprah did it. tonight the man behind the challenge. a star college athlete faced with a devastating diagnosis. >> pete says to doctor, how much money do you need to cure this thing? >> inspiring a viral sensation. >> it's going to be in time so other people will never have to have this. >> with the love of his life by his side. >> pete said to you, i'll understand if you leave? >> i'm pretty sure i told him to -- basically shut up. >> $220 million raised to fight a.l.s. giving hope to those following in their footsteps. this special edition of "nightline," "beyond the bucket," will be right back. k.

this is a special edition of "nightline." "beyond the bucket." >> good evening. thanks for joining us. you're about to meet the remarkable young man behind the ice bucket challenge. if you were among the 70 million people who took part in the viral explosion and drenched yourself in an icy shower two summers ago, you may have wondered what ever happened to all that money? and awareness that was raised? was it all just a silly craze? or as pete frates' many friends might ask, was it a game changer? it began with a simple idea. fill a bucket with water.

throw in some ice. and in the summer of 2014 -- the ice bucket challenge flooded the internet. from saintly irish nuns. >> i accept the challenge. >> reporter: to all manner of celebrities. more than 17 million people dumping ice water on their heads, helping bring massive attention to an otherwise obscure disease, a.l.s. >> everybody on the street knew the term a.l.s. >> a.l.s. >> a.l.s. >> a.l.s. >> it suddenly had a real face to it. >> reporter: with it raising over $220 million for charity. >> we've mobilized things that wouldn't have happened without the ice bucket challenge. >> reporter: it wasn't kermit or oprah or even a future president who unleashed this phenomenon.

it was a young athlete from suburban massachusetts, peter frates. >> frates is swinging the bat today with an awful lot of confidence -- >> reporter: the man behind the ice bucket. >> for a young guy like myself to be diagnosed, hopefully i can use my youth and networks that i'm part of to promote some awareness. >> reporter: and the courage he showed back then is nothing compared to the courage he's showing now. as i was about to find out. pete grew up like any other kid. growing up outside boston. hitting pop flies with dad. >> i have a kid that i knew was chosen to do something great. i've known it since he was a boy. ♪ how old are you peter >> reporter: in high school he was a three-sport star. team captain of the football and hockey teams. but it was baseball that would become his life's passion. >> going back is frates -- >> reporter: he went on to play center field for division i boston college. >> frates is the leading base

stealer -- >> reporter: wearing his lucky number 3. despite his athletic prowess, it was his personality that was larger than life. >> pete's someone that puts out this infectious energy. >> he was friends with everybody. >> reporter: beloved by his hundreds of self-proclaimed best friends. >> when i first started dating him, he'd always be like, i'd like you to meet my best friend so-and-so. i was like, how many best friends do you have? because i've met 14 best friends so far. >> reporter: his many besties will tell you the strapping hometown hero was a hit on and off the baseball diamond. >> the addendum that my wife makes to every story is, he was the best-looking guy that ever walked on the boston college campus. and when i remind her that i too went to boston college, it makes for a couple of awkward moments. >> reporter: his final year at b.c., pete was named captain of the baseball team. during a grudge match against rival harvard, he hit a monster

home run in fenway park. >> who hits a home run at fenway park, you know? it's kind of like every kid's dream. >> reporter: after a short stint playing pro ball overseas, pete came back to boston to start a. 9 to 5 job selling insurance, when he met the love of his life. what made you fall in love with pete? >> he's very handsome, that didn't hurt. but from the beginning pete was constantly taking care of me. catering to my needs. as a girl it's very flattering. that's just the kind of guy he is. >> reporter: pete and julie had just fallen in love. dreams of marriage and children in their future. but just eight months after their started dating, pete started feeling odd. having trouble with simple tasks like buttoning his shirt. after a series of tests, doctors asked him to come in. and bring his parents. >> the doctor walked in. he went like this with his hand. he said, this is not the common cold. this is not lyme disease. it's not parkinson's. it's not m.s.

i hate to tell you, pete, mr. and mrs. frates, you have a.l.s. >> reporter: it was a death sentence. a.l.s., amyotrophic lateral sclerosis. more commonly known as lou gehrig's disease. the rare neurological condition affecting roughly 30,000 mostly older americans, robbing patients of their movements, their voice, and eventually their ability to breathe, all while the mind stays alert. >> nancy ran screaming out of that office. she knew exactly the magnitude of this thing. devastated. i didn't know if i should run after her or stay with pete. >> all of a sudden i was, you know, faced with the person i wanted to spend my whole life with -- being, you know, given a timeline. >> reporter: a.l.s. currently has no known cause or cure. most patients live only three to five years on average. but almost immediately, rather than wallowing, the brawny

baseball star started looking at the diagnosis as a dare. >> pete says to the doctor, how much money do you need to cure this thing? she puts her hand on his knee and says, pete -- >> i just said a billion. i don't have any knowledge, but i think a billion would make a big impact. >> reporter: a billion-dollar challenge to cure his disease. an astronomical figure for sure, but that didn't deter pete frates. >> he said to her, i will get you a billion dollars and we'll reach bill gates. >> we're looking at each other. >> i was on the ground laughing, that's absurd. we're a middle class family, what are you talking about? >> reporter: pete became a man with a mission. >> you're young, you have your whole life in front of you, i'll understand if you leave? >> yeah, it was a short conversation. i'm pretty sure i told him basically to shut up. i was like, we're not having this conversation. and he dropped it. >> reporter: rather than tearing them apart, pete and julie promised to spend the rest of

their lives together. knowing that you were going to get married, knowing that you were about to say, for richer or poorer, in sickness and in health, what went through your mind? >> before we got married i was so nervous about the actual ceremony and saying those words. i thought, you know, i'm going to get so emotional. >> mr. and mrs. peter frates. >> all of a sudden i was empowered. yeah, we are doing this, in sickness and health. and i'm not crying about it because this is the choice i've made. >> reporter: pete, always the fighter, by this time in a wheelchair, stood up to walk his wife down the aisle. >> it's still kind of like surreal to think about. because he was pretty much always in a wheelchair at that point. >> what does that moment say about pete? >> that he literally could make himself walk if he wants to. >> reporter: it's now been nearly six years since pete's diagnosis. but thanks to modern technology, with julie by his side, he's

already outlived the average life expectancy. what do you think of this disease? >> i hate it. it's an extremely cruel way for someone to live. you are literally trapped inside of your body. no one should have to live through that. especially someone who, you know, otherwise thought he had his whole life ahead of him. >> he looks emotional to me. >> yes, he is. >> yeah. >> i think he agrees. >> reporter: though paralyzed, pete can still feel his wife's touch. he communicates emotions through his eyes. but he also uses them to move a cursor. >> these are pete's eyeballs. we try and get this arrow as much in the middle of this green sidebar. then his eyes somewhat in the middle of this box. >> so he's now controlling it? >> yes. >> reporter: and he's very active on twitter. >> oh, look. he's tweeting at me. >> reporter: it's those same social media skills that helped launch a million buckets. it was two and a half years into

his diagnosis. >> i was watching videos of the silly friends doing the funniest thins and he was laughing hysterically. >> reporter: so he challenged his hundreds of best friends, plugging into a network of athletes with massive social media followings. >> he right away was tagging people. >> tagging people that he knew of influence. >> i accept the ice bucket challenge. >> reporter: almost instantly big-name athletes stepped up to the plate. boston college alum matt ryan of the atlanta falcons. julian edelman of the patriots. >> holy smokes, that person did it, this person did it. the next thing you know your whole news feed is ice bucket challenge. >> when did it blow your mind? >> i think it must have been bill gates. >> reporter: pete's prediction came true. the world's richest man, perhaps the most powerful philanthropist, shivering for pete's cause. and that billion-dollar prediction? they were almost one-quarter of the way there in just six weeks. but as the science of a.l.s. progressed, pete's body

continued to decline. just this summer, a crisis. pete suddenly back in the hospital, reportedly at death's door. when we come back, pete frates battles back from the brink. and you're about to meet this inspirational young man who may soon benefit from pete's tenacity. tenacity. with 33 individual vertebrae and 640 muscles in the human body no two of us are alike. life made more effortless through adaptability. the perfect position seat in the lincoln continental. ♪ with flavors you'll love.re like new savory grilled mediterranean shrimp, topped with a blend of green onions, tomatoes, and herbs. and your favorites,

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but at the height of his career, he was stricken with a.l.s. >> today i consider myself the luckiest man on the face of the earth. >> reporter: it became known as lou gehrig's disease. but the griming pronot ing prii patients hadn't changed much for 75 years. >> what they told every a.l.s. patient is, go home, get your affairs in order, and make that person comfortable for the rest of their life. pete basically said, "f" that. >> reporter: instead of disappearing into the shadows, pete frates was determined to show the world how devastating a.l.s. really is. pete now breathes through a ventilator which keeps him alive. it's a difficult decision. only 10 percent of a.l.s. patients choose to make it. as a result, a nurse is on hand 24/7. daily life is a constant and costly struggle. the medical bills around $90,000 a month. pete's family now fund-raising

to help pay those bills. just a few months ago, his family thought they might lose him. but then after yet another change in medication, pete battled back. posting this video. yes, that's pearl jam's "alive." showing that his steely determination and his sense of humor still very much intact. then again, pete has a lot to live for. >> i can't imagine how happy i'm going to be when i have my own little baby. >> reporter: this was one of the last times he was able to speak, just before his daughter lucy was born. tell me about what you see in his love for his daughter. >> it's pretty crazy. he's so madly in love with her. she's the light of our lives. >> what do you tell your daughter about the future? >> 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. so this is dad, to lucy. >> lucy, daddy loves you. >> reporter: this is how pete talks to his now 3-year-old daughter. >> he'll type messages to us on this. >> reporter: a tablet screen, now the window to his mind. and right now, he's trying to capture our attention. >> oh, that's so cool. this is from the green monster. oh, boy. >> reporter: it's that home run he hit at fenway park. one of his fondest memories. just 11 years ago. >> that is a thing of beauty. >> reporter: his story inspiring this book by casey sherman. >> he realized immediately, 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. >> i think that is for sure what the ice bucket campaign did. it brought in all these great biologists, engineers, people who never thought about a.l.s.,

into the a.l.s. field. >> reporter: the ice bucket fund-raising helped usher in medical breakthroughs, from finding an a.l.s. gene to fast tracking approvals for new drugs and pushing even more into clinical trials. >> pete said to us, everything that we do is probably not going to be in time for me, but it's going to be in time so other people will never have to have this happen to them. >> reporter: 3,000 miles from boston, 22-year-old oziel mendoza is one of the countless patients who's about to benefit from one of those new drugs. tell me about the impact your doctors are telling you it's going to have on your progression. >> so it's supposed to slow the disease down by about 33%. so it's the most significant thing that's ever been tested and proven. >> reporter: like pete, he's an all-around athlete, a team captain, fell in love with his middle school sweetheart bella. they long dreamed of a beautiful wedding and starting a life together.

just last summer he started to notice a twitching and muscle weakness after a series of tests, the dreaded diagnosis, a.l.s. what was that like getting that news? >> still hard to put into words. we never expected to hear that. in our entire lives to hear two to five years is the average years that someone lives after being diagnosed with a.l.s. my whole entire life flashed by me. >> this is a brace to help you walk? >> yes and i wear them on both legs. >> reporter: less than a year after diagnosis he has to use braces to walk. when his right hand became too weak he learned to write with his left. if you could talk to pete it's right now what would you say to him? >> first i'd say thank you for everything that he's done. and for the inspiration that he's given me. and many other people with a.l.s. you know, that there's hope. >> reporter: that hope means everything. just three days before oziel's diagnosis, he asked bella to marry him. >> everybody knows the line in the wedding, the wedding vows,

in sickness and in health. >> i'm going to mean it. because every single day, i try to tell you that i'm never going to leave your side. and i'm not going to. i'm in this until the end. >> did you ever discuss not going through with the engagement? >> it sped everything up a little bit after hearing the diagnosis and what this disease holds. i want to be able to walk down the aisle. i want to be able to go on a honeymoon adventure with her, do things we've always dreamed of. >> reporter: and on a picturesque september day, just a few weeks ago, that dream came true. during their vows, he leans on her for support. >> i will cherish you for better for worse, for richer or poorer, in sickness and in health -- >> mr. and mrs. osiel mendoza. >> reporter: a.l.s. makes it hard to stand for long but osiel is determined to walk his new

bride down the aisle, just like pete frates did. ♪ someday >> reporter: together they share the first dance of the rest of their lives. ♪ when i'm awfully low >> reporter: a graceful act of defiance against a disease that steals just about everything. osiel is 22, bella is 21. what advice would you give them? >> if you try and look at the bigger picture, it's almost -- it's just too scary. every day has to be a day where you just face the challenge that the day holds. >> reporter: back in boston, pete and julie continue to fight for every day. for love. >> this is lucy's favorite show. >> reporter: for their legacy. >> she is his legacy. she's so pete in so many ways. which is amazing for me. >> reporter: pete teaching us it's not how many years you have but what you make of them that counts. we'll be right back. ♪

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tonight our thoughts are with all those affected by a.l.s., both patients,

caregivers and loved ones. if you want to dig deeper into pete frates' story, team freight train and all that's going on in the world of a.l.s., find out more on abcnews.com and our "nightline" facebook page. thanks to pete and his entire family. thank you for joining us for this special edition. good night, america.