Former Boston College baseball player Pete Frates was diagnosed with ALS (amyotrophic lateral sclerosis), also known as Lou Gehrig's disease, in 2012. Two years later, he came up with the idea to raise money for the illness by creating the ALS challenge that later became a social media phenomenon.
Yet today, as Frates lies on life support at home, his family is finding it increasingly difficult to afford the $85,000 or $95,000 a month needed to keep him alive. "Any family would be broke because of this," Frates' father, John, told CNN affiliate WBZ. “After 2-and-a-half years of this type of expense, it’s become absolutely unsustainable for us. We can’t afford it.”
The concept of the ALS challenge was simple: a person dumps a bucket of ice-cold water over their head and posts the whole thing on social media. Then, they challenge friends and family to do the same or donate money to The ALS Association. (Related: Our 7 Favorite Celebrities That Took the ALS Ice Bucket Challenge)
Over the course of eight weeks, Frates' ingenious idea raised over $115 million thanks to the 17 million people who participated. Last year, The ALS Association announced that the donations helped them ID a gene responsible for the disease that causes people to lose control of muscle movement, eventually taking away their ability to eat, speak, walk and, ultimately, breathe.
Not only that but earlier this month the FDA announced that a new drug will soon be available to treat ALS—the first new treatment option available in over two decades. Unfortunately, it's difficult to tell if this finding will help Frates in time. Another co-founder of the challenge, 46-year-old Anthony Senerchia, passed away in late November 2017 after a 14-year battle with the disease.
Even though it costs $3,000 a day to keep him alive, Frates' wife Julie refuses to move her husband to a facility, even though it would be cheaper for the family. "We just want to keep him at home with his family," she told WBZ, expressing that spending time with his 2-year-old daughter is one of the few things that keeps Frates fighting for his life.
Now, Frates' family is reaching out to the public once again by creating a new fund through The ALS Association to help families like Pete's afford to keep their loved ones at home. Dubbed the Home Health Care Initiative, its goal is to reach $1 million, and a fundraiser will be held on June 5. Head over to The ALS Association for more info.