BOSTON (CBS) — While the Frates family was raising millions of dollars for the ALS Association through the Ice Bucket Challenge, the local family was hiding their personal financial struggles against the disease.
Former college athlete and ALS patient, 32-year-old Pete Frates is still fighting for his life, is also fighting to stay with his family at home.
Nancy Frates, Pete Frates’ mother, sat down with Paula Ebben and Ken MacLeod on Wednesday. She echoed what her husband John, and daughter-in-law Julie, told WBZ-TV’s Paul Burton on Tuesday: it is overwhelming.
“We basically have an ICU unit in our home,” explained Frates.
Pete needs 24-hour care. He is also on a ventilator, something many ALS participants choose not to do because of the financial burden alone.
“When we were given the diagnosis in 2012, of course, the whole enormity of Pete having this disease, and once we started getting into the clinic and learning about the disease, then the second shoe dropped when they said ‘now, you know if he chooses to go on a ventilator, that it costs an average of $250,000 – 300,000 a year.’ Now when you hear that, you’re trying to get over the trauma of the diagnosis and the emotions of that, you can’t even fathom that you will ever get to that,” Frates said.
She also discussed that there is a struggle because “care versus cure” fundraising and education.
A fundraiser for Pete Frates will be held on June 5.