Father Who Inspired Ice Bucket Challenge and Raised $220 Million for ALS Research Has Run Out of Money for His Own Care

The man who helped spark the ALS Ice Bucket Challenge, the wildly popular craze that brought in more than $220 million to combat the disease, now doesn’t have enough money of his own to stay in his home and receive care.

Pete Frates, 32, who is credited with popularizing the viral phenomenon that aimed to find a cure for amyotrophic lateral sclerosis, is almost entirely paralyzed and on a feeding tube.

The out-of-pocket cost for care at his Beverly, Massachusetts, home near Boston is about $2,400-$3,000 a day, or as much as about $1 million a year, a crushing financial burden the family can no longer afford, his mother, Nancy Frates, tells PEOPLE.

So Pete is once again trying to raise money, but this time for himself and others like him who need help paying for in-home care needed to battle the incurable disease. Also known as Lou Gehrig’s disease, the condition causes people to lose muscle function to the point where they can no longer walk, dress, write, talk, swallow or breathe; life expectancy averages about two to five years, according to the ALS Association, which is sponsoring the online fundraising program to offset home care costs.

A fit and healthy man who was captain of his baseball team his senior year at Boston College, Pete knows all too well the devastation caused by the disease. He now depends on one machine that breathes for him and another that supplies him with nutrition. His mind is fine, he can hear and see, but his body is immobile except for a few remaining facial movements, including his eyes, which he uses to operate a device that types and speaks for him, according to his mom.

Pete relies on 24-hour-a-day skilled nursing care, a $100-an-hour cost not covered by his insurance, his mother says. Money brought in from other fundraisers has been depleted, according to Nancy. She and her husband, John Frates, both left their jobs to care for Pete, who lives with them along with his wife, Julie, his college sweetheart who he married about a year after his diagnosis, and their daughter, Lucy, who turns 3 in August.

“Pete deserves to be here for Sunday dinners and every dinner in between,” says Nancy, who notes that contributions also can be made directly to Pete here. “This gives people an opportunity to give money that directly impacts a family.”

Diagnosed with ALS in 2012, He Vowed to Work for a Cure

Pete’s struggle with the ailment began one summer day in 2011 during an amateur league baseball game when a pitch hit him on the wrist. Visiting doctors to find out why his hand never recovered and continued to hang limply, the family learned in March 2012 that Pete, then 27, didn’t have a broken bone or pinched nerve, but instead had ALS, Nancy says.

He vowed that day to work for a cure. “Pete told us that we had been given the opportunity to change the world,” his mom says. “He said we’re not going to ask why, we’re going to get to work.”

His success at local fundraising led to the Ice Bucket Challenge; during its height in 2014, it was difficult to go a day without seeing a video of regular folks or celebrities getting doused with ice cold buckets of water and/or contributing money to the cause.

The ALS Association said those donations helped lead to the discovery in 2016 of NEK1, a gene that contributes to the disease. ALS is inherited in about 5 to 10 percent of cases while no one knows what causes the remainder.

“Still not dead,” Pete tweets

Nancy acknowledges that any cure will likely come too late for Pete, whose perilous health has him in and out of the hospital.

“He can’t fight the disease,” she said on Friday, just a few hours before Pete was once again rushed to the hospital. Despite erroneous reports that he had died, he is currently being treated in the ICU for pneumonia, she said Wednesday, and with his sense of humor intact.

On Monday, he tweeted a video of himself while Pearl Jam’s hit “Alive” played in the background.

He tweeted another photo on Tuesday with the caption: “happy fourth yall! … Still not dead.”

In fact, the blunder, which was quickly retracted, only served to fire him up. “It has given Pete almost a new lease on life,” Nancy says. “Instead of getting angry, he’s even more determined to beat this infection.”

She hopes he will released back home within a week.

“Most ALS patients don’t make it this far,” she says. But in the remaining time he has, “He wants to live and stay at home.”