July 07, 2017 05:26 PM

A new fundraising program named in honor of Pete Frates, the man who helped popularize the ALS Ice Bucket Challenge, is ready to help its first person — Pete himself.

Frates, 32, and his family will be the first beneficiaries of a fund set up to help cover the cost of in-home caregivers for people battling amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease.

“We are so blessed with amazing support,” says Pete’s mom, Nancy Frates, confirming she was notified of the grant.

“We are humbled by people’s generosity and so very grateful,” she adds.  “We can bring Pete home and concentrate all our energies on making every second loving and joyful for him.”

Nancy told PEOPLE that caring for Pete at their Beverly, Massachusetts, home near Boston costs $2,400-$3,000 a day out-of-pocket for skilled nurses, a fee not covered by his insurance and which the family can no longer afford after running out of money donated by well-wishers.

When a group of Boston philanthropists offered to help, the national ALS Association and its Massachusetts chapter established the Pete Frates Home Health Initiative, Nancy says.

The program kicked off in June and has already brought in more than $1 million in donations, Lynn Aaronson, Executive Director of the Massachusetts ALS chapter, tells PEOPLE. Organizers are looking to provide grants to assist three to five people in Massachusetts with the hope to expand it to all 40 chapters nationwide, she says.

Pete, who was diagnosed with the debilitating disease in 2012, became a prominent face for the cause when he helped spark the ALS challenge. The 2014 viral social media phenomenon had people around the globe dumping buckets of ice water over their own or others’ heads in a fundraising bid that collected more than $220 million for research, which led to the discovery of a contributory gene.

Meanwhile, Pete’s health continued to deteriorate. Though his mind is fine and he can see and hear, the one-time college baseball player is now a quadriplegic who can’t speak or swallow and can only move parts of his face, Nancy says. He is on a feeding tube and ventilator.

Initially, she and her husband, John, quit their jobs to care for him at their home, where Pete moved in with his wife, Julie, and the couple’s daughter, Lucy, who turns 3 in August, she says.

But Pete now requires additional help; the nurses who tend to him 24 hours a day, at a cost of $100 per hour, perform such tasks as suctioning fluids from his lungs every two to three minutes, attending to his bathroom needs, maintaining his feeding tube, administering medications and treatments and monitoring for infections, Nancy says.

“Every bodily function has to be cared for,” says Nancy, who notes that contributions also can be made directly to Pete here. Without intervention, she says, “He would have already died.”

Placing him in a medical facility, she says, is unthinkable.

“He wouldn’t last a week in a nursing home,” she says, while having him at home gives the family peace-of-mind about his care while he gets a boost from spending time with Lucy and the rest of the clan.

Courtesy Nancy Frates

Care at home can offer many advantages, agrees Calaneet Balas, an ALS executive vice president. “I don’t think any of us can comprehend being trapped in your body and then feeling trapped at a nursing home or a hospital,” she tells PEOPLE. “The idea that being surrounded by people they love and trust and who will take care of them is pretty reasonable.”

As someone with late-stage ALS though — the average life expectancy is two to five years — Pete’s condition remains precarious. Friday marks one week since he was re-admitted to the hospital suffering from pneumonia after an earlier 10-day stay in June, Nancy says. He is listed in fair condition.

Meanwhile, she is eagerly awaiting the day he can return home. “He’s my son,” Nancy says, “And it’s where he belongs.”

You May Like