The creator of the Ice Bucket Challenge, raising millions of dollars to help find a cure for ALS, is now facing a challenge of his own.
Thirty-two-year-old Pete Frates has been battling the disease and now his family are struggling to pay for his healthcare costs.
When he was diagnosed, the Frates family converted his home into essentially an ICU.
Pete is now on life support and his daughter and wife stay by his side. It's his family which keeps him going, but the 24-hour homecare cost is overwhelming.
But the thought of putting him into a facility away from family isn't an option.
"He's in the advanced stages. He's very sick. It's costing us US$3000 a day for specialised nursing," his father John Frates told CBS News.
"If we put him in a home, which is something that would be paid for by his insurance, he would last a day."
His Ice Bucket Challenge raised US$250 million for ALS research. None of the money went to Pete.
Now longtime family friend and philanthropist Rob Griffin has teamed up with the Frates' family and ALS with a new initiative to help raise money specifically for families like Pete.
The goal is to raise US$1 million.
"Our goal is to raise money to be really impactful for perhaps a few patients each year," Mr Griffin said.
"It's not like our normal programs where we try to help every single patient in Massachusetts."
John is hoping people will help out his son, after he's already done so many for others.
"What cost is a life? Is it $3000 a day? I hope so," he said.
Newshub.
