Imagine if you were living with amyotrophic lateral sclerosis, otherwise known as Lou Gehrig’s disease, and the annual cost of your care soared close to $1 million.
That’s the situation that Pete Frates is facing right now.
The former Boston College baseball player who helped launch the ALS Ice Bucket Challenge lives at home and requires round-the-clock care, but his family can’t keep up with the enormous medical bills.
The cost of Pete’s care can run between $70,000 and $95,000 per month, according to his mom, Nancy Frates.
“The generosity of people has sustained us to this point,” she said in a telephone interview. But the astronomical costs have become “unsustainable.”
Pete is now 32 years old, and has lost control of his limbs. He is on a ventilator. He can’t swallow his own saliva. He can only communicate with his eyes.
“He’s basically on life support,” she said.
Although donors have been exceptionally generous, she said, the costs are simply too much to bear, because his care is not covered by their insurance. (What’s even more frustrating, she said, is that if he were in a hospital the costs would be covered. “It’s crazy,” she said.)
The ALS Association has a pilot program called the Peter Frates Home Health Initiative to help provide in-home caregiving assistance for individuals suffering from ALS in Massachusetts. To donate to that initiative, or to contribute to the fund for Pete’s care, visit petefrates.com/donate.
Fans of Frates should also take note: His life will soon be the subject of a new book by Dave Wedge and Casey Sherman titled “The Ice Bucket Challenge: Pete Frates and the Fight Against ALS.” It’s scheduled to be released in the fall, and half of the authors’ proceeds will go to the Frates family.
Nancy Frates says the family is grateful for the donations and wants “to shine a light, awareness if you will, on this financial burden of home health care for all people living at home with ALS.”