His family is struggling to pay monthly bills upwards of $85,000.

By Faith Brar
Updated: November 30, 2017

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."

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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.

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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.

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Comments (3)

Anonymous
May 24, 2018
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Anonymous
May 4, 2018
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info7349733
April 5, 2018
My mother was diagnosed with ALS in May 2014. Her doctor put her on riluzole, letting her know there was no cure but the medication might provide her a few more months of delayed symptoms. ALS progresses at different rates and affects different body parts first. My mother, being 80 at the time, fell into a category of what they call "fast progression" (older female). Her arms weakened first, then her hands, her mouth, and throat, and finally her lungs. Throughout her two-and-a-half-year ordeal, she was able to walk with assistance. All the while she continued to take the riluzole. If it bought my mother any time, we will never know. Her neurologist told us that if she couldn't afford it, there was no real need to take it. She lost touch with reality. Suspecting it was the medication I took her off the riluzole (with the doctor’s knowledge) and started her on the ALS natural herbal formula we ordered from GREEN HOUSE HERBAL CLINIC, We spoke to few people who used the treatment here in Canada and they all gave a positive response, her symptoms totally declined over a 7 weeks use of the Green House ALS disease natural herbal formula. She is now almost 84 and doing very well, the disease is totally reversed! (Visit their website ww w . Greenhouseherbalclinic . com) I am thankful to nature, herbs are truly gift from God. I will keep sharing more awareness, Share with friends!!