Pete Frates struggling to keep up with health care costs

BOSTON — The local man who helped spark the Ice Bucket Challenge that raised millions for ALS research is now in desperate need of money.

Pete Frates’ family said he is very sick and is struggling to keep up with health care costs.

"Tha'ts the biggest thing that we're wrestling with, because we live this," his dad, John Frates, said. "After we got this trach, it's a game changer, it needs constant supervision."

Frates, 32, became a household name when he sparked the Ice Bucket Challenge, prompting millions of people around the world to donate to ALS research with the hopes of finding a cure.

"We're paying $100 an hour, 24 hours a day," John said.

Frates’ parents said that the money is needed to help care for their son. They said it costs between $80,000 and $90,000 a month to keep Pete Frates alive, and they’re running out of money.

They said they hosted a variety of fundraisers over the years to raise money for Pete’s care, but the money raised from those fundraisers isn’t enough.

"People have been so amazing for us...but the hole in the bucket now is so large," John said. "[Pete] requires a very high level of skilled nursing."

Pete Frates has been living with ALS for the past five years.

His debilitating disease has robbed him of the ability to walk, talk and move on his own.

His mother says he needs a variety of treatments every day and also needs a nurse around the clock.

She said that the level of care costs about $100 an hour and isn’t covered by insurance unless Pete Frates was on Medicare.

"Yes we could put him in a skilled care home...but for us, for a young guy, he thrives being with his [family]," John explained. "It's keeping him on this earth."

To help Pete Frates and other families struggling with bills associated with care, the Frates family is working with the ALS Association to create a home health care initiative.

That will kick off in Boston, according to Frates’ father, next month.

His family has set up a fund that doesn't go directly to the foundation and is not tax deductible. For more information about donating, click here and look for the donate button.

The next fundraiser for the family is with Boston Solar; buy a $200 raffle ticket for a chance to win a $25,000 solar system. It is expected that the raffle will give the family $30,000 toward Pete's care.