B-ton FP Dec.'00


The Board/Officers
Donate Now
Contact Us
Photo Album
What Is ALS?
Living With ALS
News Articles
Memorial Orchard

Foundation, book give widow drive, Burlington Free Press, December 26, 2000.  by Emily Stone.


    Last month, Heidi Vance should have celebrated her one-year wedding anniversary.
    Instead, this month, she marked a different anniversary.  It's been one year since her 26-year-old husband died of Lou Gehrig's disease. 
    Curtis Vance died last December in his hometown of Danville - only three weeks after his wedding.  He struggled for more than a year with this disease, formally known as amyotrophic lateral sclerosis, or ALS, which attacks the nerve cells in the brain and spinal cord.
    In the time since his death, Heidi Vance, 25, has thrown herself into two projects that honor her late husband.  Next week, she will present her first donation from the charitable foundation set up in Curtis Vance's name.  She is also preparing to write a book to tell the couple's story.
    "When I stop for too long, I lose a sense of purpose," Vance said recently, "Then I just pick up with the foundation or with the book."
    Heidi moved from Danville this fall to stay with her family in Connecticut and get some rest.  Still, she visits Danville a couple of times a month.
    That is the place where she feels the most connected to Curtis, she said.  It is where they met 10 years ago as teen-agers at Joe's Pond.  It is also where the couple moved when Curtis became sick.  And it's where he died in his bed, surrounded by his family and with Heidi Vance lying next to him, her hand on his heart. 
    To raise money for the foundation, Heidi threw a party last spring.  It was supposed to be the spring wedding reception that Curtis had wanted, so Heidi decided to have a fund-raising celebration instead.  There has also been a golf tournament in St. Johnsbury, a bowling tournament in New York, and Heidi Vance's mother's 50th birthday party, where donations were made instead of gifts. 
    The group has raised just under $30,000 and will give its first $5,000 to Massachusetts General Hospital on Jan. 6, Vance said.  The hospital treated Curtis, and its doctors conduct research on ALS.
    When Vance called the hospital to announce the donation, she said she felt Curtis' presence nearby, telling her she was doing the right thing.  She senses him occasionally, though intensely, she said.
    She believes he was there when she sat down to work on her book one day to write yet another draft of the day when Curtis died.
    "I was just sobbing, which isn't very usual for me," she said.  "And I felt him.  He was right there looking over my shoulder saying, 'It's OK; just get it out.'"
    Vance finished writing that day without realizing she had written the whole scene from Curtis' point of view - how first his ears turned purple and then his chest, as he struggled to breathe with the help of a machine.
    During the course of his illness, the couple made the most of their time together.  They threw parties, and had guests over constantly while his health deteriorated.  ALS kills off nerve cells so the ability to move, including breathing and eating, is eventually lost.  A patient's mental capacities remain intact.
    Vance hopes her book will help people understand what it is like to live with ALS or watch a loved one fight it.  She hasn't decided whether she will write it as fiction or nonfiction, she said.
    On the anniversary of Curtis' death, Vance went with much of Curtis' family on a Caribbean cruise.  She and Curtis had gone on a similar cruise with his family just after he got sick.
    Last month, for the weekend of her would-be wedding anniversary, Vance celebrated another wedding.  Her older sister, Heather, was married the Saturday after Thanksgiving, the same day Vance had been married.
    Heather and Curtis had been close, and she was respectful of not wanting to upset Vance with the timing of the wedding, Vance said.  Still, as the date crept closer, Vance said she began to have a hard time dealing with her memories and her sister's joy at the same time. 
    So Vance asked herself a question, that she'd repeated countless times since Curtis became sick: "What am I learning from this?"
    She got her answer.
    "It was Curt's way of showing me that life goes on, and love is really what we're all here for, in one way or another," she said.  "It ended up being extremely healing.  I couldn't imagine doing anything else that Saturday night."

To help: For questions or to make a donation, write the foundation at P.O. Box 203, Danville, VT 05828, or call Heidi Vance at (860) 721-1860.

Back to News Articles.