Pete Frates, the man who inspired the Ice Bucket Challenge to raise awareness about amyotrophic lateral sclerosis, is now struggling not only with the disease itself but also to pay for his medical bills.
His family can no longer keep up with the tremendous financial cost of ALS care, which has now reached $3,000 a day.
The former Boston College athlete, now 32, is currently on life support at home. His bedroom has been turned into an Intensive Care Unit, so that his wife and 2-year-old daughter can be constantly by his side.
ALS, more popularly known in the United States as Lou Gehrig's disease, is a neurodegenerative disorder that attacks nerve cells.
This disease weakens the muscles and eventually leads to total paralysis, making even the simplest things, such as speaking, swallowing and breathing, difficult to perform.
This is why Pete is now completely dependent on life support and the care of his family.
Honoring A Promise
The 24-hour home healthcare comes with a monthly cost of $85,000 to $95,000, which puts a considerable strain on the family.
"Any family would be broke because of this," said John Frates, Pete's father, who disclosed the family has been trying to cope with the enormous expense for two and a half years.
Yet the situation has reached a point where "it's become absolutely unsustainable for us," confessed the older Frates.
This is why the family is now reaching out for help, so they can continue to afford keeping Pete at home — just like they promised him when he was first diagnosed in 2012.
The Frates family is trying to avoid having to commit Pete into a specialized facility away from his wife and daughter.
According to the family, it's the two of them that give Pete the resolve to continue fighting this neurodegenerative disease.
Boston Fundraiser For Pete Frates
To help other families dealing with the same situation, the Frateses partnered with philanthropist Rob Griffin, who is also an old family friend, and the ALS Association, in an initiative to raise funds particularly for this type of cases.
"We hope to start an initiative to help the Frates family and all families that are going through that, and hope it takes off on national basis," said Griffin.
As a first step, the organizers are planning a fundraiser for Pete, which is set to take place on June 5 in Boston. The ultimate goal is to raise $1 million through the Home Health Care Initiative.
"I'm just extremely grateful that they are recognizing how significant Pete has been in this community. We just want to keep him at home with his family," said Julie Frates, Pete's wife.
What The ALS Ice Bucket Challenge Has Achieved So Far
Pete, who is a former captain of the Boston College baseball team, first started the Ice Bucket Challenge back in 2014, when he was 29 years old, and it immediately went viral on social media.
Besides public awareness, his initiative raised substantial amounts of money for the ALS Therapy Development Institute.
In the last three years, the ALS Ice Bucket Challenge inspired donations that totaled more than $250 million.
The money funded ALS research and in 2015 helped scientists at Johns Hopkins University investigate the role of the TDP-43 protein in the development of ALS.
Last year, the ALS Association reported another breakthrough, when researchers at the University of Massachusetts identified a gene responsible for ALS.
Earlier this month, the U.S. Food and Drug Administration approved the first new ALS treatment in more than two decades.
The intravenous drug, called Radicava or edaravone, is the second treatment drug to be greenlighted by the FDA for the condition and will be available for ALS patients in the United States starting August.