Terri Schiavo Life & Hope Network: Bobby Schindler's Organizations Advocates for Patients with Cognitive Disabilities

After the medical and legal battles surrounding the Terri Schaivo case, her family has taken their Narberth-based organization to the national level.

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CARRYING ON: Bobby Schindler in front of a portrait of his late  sister, Terri Schiavo. (Photo by Jared Castaldi)
Twenty-three years have passed, but the memories are still vivid. Bobby Schindler’s father called just after 5:30 a.m., and he rushed to his sister’s apartment, where he found her unconscious on the floor. He’d just seen her a few hours ago at his own apartment in the same Florida complex. She’d been fine then. She just had to be fine now.

Paramedics worked on Terri Schiavo for 30 minutes before she was stable enough to be transported. “If she makes it to the hospital alive, it’ll be a miracle,” someone told Schindler as they wheeled her into the ambulance.

His 26-year-old sister did make it to the hospital alive that February morning in 1990. But it was only the beginning.

It’s now June 2013, and Schindler lives in Narberth, his two-bedroom apartment within walking distance of the Terri Schiavo Life & Hope Network. The converted Victorian home is a modest but comfortable headquarters for the nonprofit organization, with just enough space for Schindler and his mother, Mary, who often visits from Florida. His father passed away in 2009. Additional storage space downstairs houses the countless documents and court records that chronicle and dissect what happened to his sister, right up to her controversial death in 2005.

The family originally established the Terri Schindler Schiavo Foundation soon after her death, running it in St. Petersburg, Fla., until 2011. But Schindler—who grew up with his sister and their family in Huntingdon Valley—relocated to the Main Line to be closer to New York and Washington, D.C. With the move came a change in name, but not the overall mission, which is “to protect the rights of people with cognitive disabilities and the medically vulnerable who are facing life-threatening situations.”

“I missed the Philadelphia area a lot,” says Schindler. “I can’t tell you how much support we’ve received in just the past year. It’s a much better situation here for our cause.”

The difference in last names prevents strangers from making any initial connection between Schindler and his sister. But once they find out, he’s accustomed to correcting the misconceptions they have about Terri’s death. “People’s understanding of her condition is completely inaccurate,” he says. “People have said to me that they thought she was brain dead, that she was in a coma, that she was hooked up to machines, or that she was dying. None of that is true.”

Schindler blames most of it on how the media reported the story, which enthralled the masses for more than four years. Schindler and his younger sister, Suzanne, have traveled the world to make sure the truth is out there. And, in 2006, the family wrote the book, A Life That Matters: The Legacy of Terri Schiavo—A Lesson for Us All.

It’s certainly not the lifestyle the former Catholic high school teacher had envisioned for himself. “My friends still can’t believe I do public speaking,” says the soft-spoken Schindler. “They still make fun of me for it.”

But while Schindler never sought out the recognition, he really had no choice.

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