AUDIE CORNISH, HOST:
An advocate for people with disabilities died over the weekend. Nick Dupree had a neuromuscular disease and depended on a respirator to breathe. We first heard him on this show in 2003. The state of Alabama had been paying for nurses to come into his home and even take him to college classes. But that care was about to end, and he was facing life in a nursing home, where he feared he would die. Here's what Nick and his mother told NPR back then. You can hear the sound of his whooshing ventilator in the background.
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RUTH BELASCO: It doesn't make any sense whatsoever.
NICK DUPREE: It's inhumane.
BELASCO: Well, it's also inhumane. The state is sort of...
DUPREE: Not moral.
BELASCO: They're cutting people off. It's saying there's no care. We'll just put this guy in a corner and hope for the best.
CORNISH: NPR's Joseph Shapiro has this remembrance.
JOSEPH SHAPIRO, BYLINE: Tomorrow would have been Nick Dupree's 35th birthday. When he was about to turn 21, all he wanted was a life.
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DUPREE: I want a life. I just want a life like anyone else, just like your life or anyone else's life.
SHAPIRO: Every state has a program that pays for in-home care for severely disabled children but only until they turn 21. Dupree started an online campaign - he called it Nick's Crusade - to keep that care going. And just days before his birthday, he won and forced change in Alabama.
A few years after that, he decided to move to New York City, and there, he made friends. He went to museums. Nick could move just the tip of his thumb and his index finger just enough to make online comic books that reflected his quirky humor, like "Theodore Roosevelt And The Rough Riders Versus Zombies." One more important thing happened in New York. Here's his mother, Ruth Belasco, speaking this morning.
BELASCO: It was just wonderful that he fell in love. And it was a wonderful story. And it was something that he always hoped for, you know - very romantic young guy. And he actually found someone who loved him and he loved in return.
SHAPIRO: That woman, who he met online, was Alejandra Ospina.
ALEJANDRA OSPINA: We had vows. We had lots of people. There was food.
SHAPIRO: Their wedding ceremony was in Central Park.
OSPINA: And it was very windy that day, which didn't play well with the ventilators (laughter). But it was all right.
SHAPIRO: They held the wedding, but like other people with disabilities, they didn't officially marry because their incomes would be counted together, and Medicaid would have cut Nick's benefits.
OSPINA: He lived with me in an apartment in the community for seven years and eight months.
SHAPIRO: She knows exactly because that's how Nick, who wasn't supposed to live past his 21st birthday, counted days and time. The ending to Nick's story, though, is not a happy one. The people who loved him ended up feeling helpless and guilty because it's really hard to provide round-the-clock care. Ospina has cerebral palsy and uses a wheelchair. When nurses didn't show up for their shifts, she and Nick would fight over caregiving. They separated last spring. Nick decided to move to a hospital, the place he tried to avoid his whole life. In recent months, he got pneumonia and bedsores.
BELASCO: Each time he got sick again, it would be worse and worse and worse. And his ability to withstand that just ran out.
SHAPIRO: His mother, Ruth Belasco, wanted him to come home to Alabama, but that wasn't easy. She already spends her nights caring for Nick's younger brother, who has the same disease. Then last week, Nick got sepsis and heart problems and died. Joseph Shapiro, NPR News.
(SOUNDBITE OF DUSTIN O'HALLORAN SONG, "AN ENDING, A BEGINNING")
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