Pete Frates, whose name is now inextricably linked with Ice Bucket Challenge and ALS, can no longer speak, walk, or move his arms. But he has still got a smile and the will to live, despite the incurable neurodegenerative disease that has robbed the former athlete of so much.
In a recent essay, which he painstakingly wrote with the use of technology that allows him to pick a letter by looking at it on a keyboard, he said that he is looking forward to becoming a father: wife Julie’s due date is Sept. 10.
“It is this excitement that keeps my engines going at full strength,” he wrote. “The thought of seeing the face of our first child and knowing that I am a father is a moment I will cherish beyond words. I may not know how many years I have left, but I will fight harder and harder each day to be there as a father and a husband.”
In fact, his parents say, Frates has decided to get a ventilator when he can no longer breathe on his own. He already has trouble swallowing, eats through a feeding tube, and has decreased lung capacity, his mother, Nancy, says. His family spoke to the Globe at Fenway Park Thursday, after Frates took his own Ice Bucket Challenge, with Julie doing the dousing.
“It’s a personal decision and not everyone with ALS does it,” his father, John, says of the ventilator. “But he’s young, they’re going to have a baby, and he wants to be around.”
The Frates family is busy getting a nursery ready in the apartment Pete and Julie live in, which is attached to his parents’ Beverly home.
Frates is largely responsible for the Challenge going viral and raising millions of dollars for ALS research and support. Ethel Kennedy, Bill Belichick, pols, celebs and ordinary people have dumped a bucket of ice water over their heads and challenged others to do the same within 24 hours, or else make a donation to the ALS cause.
The nonprofit ALS Association, one of many such causes, says that it has 70,000 new donors since the Challenge took off in late July, and its chapters have received $4 million in donations, compared with about $1 million during the same period last year.
“We have never seen anything like this in the history of the disease,” says Barbara Newhouse, president and chief executive of the association. “We couldn’t be more thrilled with the level of compassion, generosity ,and sense of humor that people are exhibiting as they take part in this viral initiative.”
Frates, the former captain of the Boston College baseball team, was diagnosed in 2012 with ALS, also known as Lou Gehrig’s disease for the Yankees captain who left baseball because of it in 1939. Frates, who was also a three-sport athlete at St. John’s Prep in Danvers, keeps a poster on his wall of Gehrig, and says “he inspires me every day.”
He got the idea for the Ice Bucket Challenge from another young man who suffers from the disease, Patrick Quinn, who lives in Yonkers, N.Y. Frates and Quinn found each other online, and when Quinn comes to Boston for medical treatments, he stops and visits Frates, who started his own Challenge on July 29. It has since exploded on social media.
“Since Pete was diagnosed, he knew he was going to take part in changing the path of this disease,” says his wife. “It’s misunderstood — how quickly it progresses, how there’s no cure, how we still don’t know what causes it.”
His parents describe the diagnosis on March 13, 2012. “The next question out of our mouths was, ‘What’s next, what has to be done?’ I don’t know which was more devastating, the diagnosis or being told there was nothing we could do,” says his mother.
Adds his father: “It’s been 75 years since Lou Gehrig. There should be effective treatment. But they told Pete to basically, go to GNC [General Nutrition Corporation] and get his affairs in order. Are you kidding me? There’s nothing. It’s horrible. It’s devastating. It’s unacceptable.”
There is one drug approved by the FDA to treat ALS, but it only extends survival by two or three months, according to the ALS Association. Those with ALS live an average of 2 to 5 years after diagnosis.
It is clear that his family is proud of the way Pete has handled the disease in which the body fails but the mind remains intact. “Most people in this condition don’t want to be seen, but Pete’s putting himself out there,” says his dad.
Team FrateTrain, as they call the effort, is a family affair. His Uncle David built the website, Uncle Artie handles the finances and Auntie Judy handles the public relations. His younger brother, Andrew, was his caregiver for two years, only recently returned to work, in alumni affairs at St. John’s Prep. His older sister, Jennifer Mayo, provides frequent visits with her 2-year-old daughter Adelyn, who adores her Uncle Pete.
Family and friends have planned an Oldtime Baseball Game at St. Peters Field in Cambridge on Aug. 25 in honor of the 75th anniversary of Gehrig’s retirement speech at Yankee Stadium, in which he famously called himself “the luckiest man on the face of this earth.”
Frates knows a cure will be too late for him. But, he wrote: “I want the 100th anniversary of Lou Gehrig’s speech to be a celebration of a courageous man who became the poster boy for a disease with a cure, not a cruel reminder of how nothing has changed in a century.”