After Andre Williams was diagnosed with the progressive neurodegenerative disease ALS, a decade ago, he had only a brief bout with the kind of depression that for some can mark the rest of their lives.
“It didn’t take him long,” said his wife, Antoinette Williams. “Because once he realized it was a part of his life, he said, ‘I still have to live my life.’ ”
And with that, Williams — who died Nov. 4 at age 57 — coined a phrase he ultimately trademarked and put on fundraising T-shirts: “I have ALS. ALS doesn’t have me.”
Andre Williams Sr., an Army veteran who lived in Hempstead, became an energetic voice for awareness and research of the debilitating disease. He attended galas, lobbied elected officials and was a dependable presence at charity walkathons on Long Island.
His Twitter account was filled with affirmations, including one of his last, on Sept. 22: “If I was to say, that in the past 11 years living with . . . ALS destroyed my life, I would be selfish. Just think. I’m still here.”
Already, Williams, a plumber before being stricken with the disease, had long beat doctors’ original prognosis that he’d likely survive just a year.
And with his mind still sharp, his wife said she believed he’d continue on much longer, if not for an Oct. 28 accident.
Williams, who was a wheelchair-user, and his daughter were inside a haunted house attraction at Nassau Coliseum when the hose to his portable ventilator became disconnected inside a dark passageway, Antoinette Williams said.
By the time Williams was taken to an ambulance, he’d stopped breathing, she said. He never regained consciousness and died at Nassau University Medical Center.
“If he saw something he wanted to do, he did it,” Antoinette Williams, said, noting family trips to Disney World and on cruises, and the couple’s vow renewal ceremony last summer. “He didn’t let anything stop him.”
Andre Williams was born in Far Rockaway, Queens, growing up there and in nearby Jamaica. He met his future wife when he was 16 — she was 14.
As a teen, Williams played piano and sang in a band, and impressed his then-girlfriend by building her a bicycle by hand using spare parts.
After high school, Williams enlisted in the Army, where he was a field artillery crewman in active and reserve duty for 16 years. Williams later advocated for veterans of his Cold War generation to receive local property tax exemptions.
But it was ALS research that was his greatest cause. Williams often addressed support groups for newly diagnosed ALS patients.
“He was a resource to all these families,” said Kristen Cocoman, president and CEO of the ALS Association’s greater New York chapter. “He was so incredibly positive, and very much about taking this bull head on, grabbing it by the horns and saying, ‘Here I am, I’m not going down easy.’ ”
Besides his wife, Williams is survived by three children: daughter Ty-Sheena Williams-Franklin, of Tampa, Florida; son Andre Jr., of Baldwin, and daughter Shaquera, of Hempstead; sisters Lailah Boyd and Lisa Williams, both of Far Rockaway; brothers Robert Perkins, of Manhattan, and Kevin Williams, of Jamaica; and seven grandchildren.
Funeral services were held this month at Grace Cathedral International in Uniondale. In lieu of flowers, the family asks that donations be made to ALS research and awareness.