LASTING LIGHT, LEGACY
Frates family creates fund for those diagnosed with ALS
On at least four occasions, doctors have pulled Nancy and John Frates into a room to tell them that their son, Pete, was not going home.
But time and time again, Pete Frates has beaten the odds. People stricken with ALS, a cruel and crippling disease, typically live just two to five years after they’ve been diagnosed.
Pete has outlived that grim prognosis by a couple of years, having been diag- nosed with ALS, also known as Lou Gehrig’s disease, nearly seven years ago when he was 27. He’s beaten the potentially life-threatening sepsis and pneumonia.
“His doctors have said that he’s in extra innings,” his mother, Nancy Frates, told me.
There are three things key to Pete’s longevity, his mother said.
That’s his sheer determination and will to live; his wife, Julie, and their 4 yearold daughter, Lucy; and the level of care he gets at his Beverly home, where he’s surrounded by family and skilled nurses around-theclock.
Now, the family wants other people battling ALS to be afforded the same care at home, and have launched the Peter Frates Family Foundation in his honor. The foundation will also help Pete.
“This is our family’s legacy for Pete,” Nancy said.
“We don’t know what the next five minutes are going to bring but we don’t know what the next five years are going to bring,” she told me. “Pete will die from ALS, but do we put a time frame on that? Absolutely not. Because if we did, it would have been two to five years and we’re coming up on the seven-year anniversary.”
Pete, a former Boston College baseball captain, was the inspiration behind the Ice Bucket Challenge, which raised more than $250 million toward research and finding a cure for ALS.
The new foundation will help people with ALS pay for caregiving and nurses so they can stay at home with loved ones. It costs $100 an hour to pay for athome care for Pete, who has been on a ventilator for five years. “He lives literally on machines and drugs and therapies,” Nancy said yesterday. “We totally understand the financial burden put on a family to keep their ALS patient in their home.”
Pete, his mother said, should be in the room at night when his wife reads books to their daughter and when the family watches a movie. “He deserves to be in the home,” Nancy said. “Well, with that, comes a cost.”
Nancy said her skin crawled when she learned some ALS patients were choosing death over costly care.
The Frates have teamed up with Spotfund, an online donation platform, to raise money for the new foundation. They hope to raise $5 million.
Spotfund created a pow- erful video of Pete using family videos. There’s Pete as a boy swinging a bat at T-ball. There’s Pete more recently, being tended to by caregivers and family, with the hum of the machines keeping him alive.
“Every picture of Pete, from when he was 2 to today, always has a smile on his face,” Nancy said. “He was always a bright light and he continues to be.”
To donate, visit spot.fund/Pete.