About five years ago, Ann Depuy was close to earning her master’s degree in library science, happily married with two kids, when she began struggling to pronounce certain words.
Soon, she was having trouble swallowing.
Within one year, the 64-year-old New Canaan resident received a frightening diagnosis: progressive bulbar palsy. A form of Amyotrophic Lateral Sclerosis, it attacks the nerves in the head and neck areas before affecting the rest of the body.
In the years since, Depuy has lost the ability to speak and eat with her mouth, as well as almost all motor function, according to her husband, Warner. She now breathes with the help of a ventilator.
“Why anyone would have to go through this, who knows,” Warner Depuy said on a recent afternoon. “But for it to happen to someone as wonderful as Ann is rough. The last two years, since she became fully immobile, have been a tough struggle, especially for someone as active as her. Thankfully, she has a very accepting personality that sees everything the best she can. I think when something like this happens to you, the essence of your personality comes out and you can either deal with it or you can’t.”
The same goes for all the Depuys, Ann and Warner and their children, Nick and Michaela.
Facing major costs to ensure that Ann Depuy can remain comfortably at home, the family has planned a personal and special fundraiser for next week.
Nick Depuy, a New Canaan High School graduate who is a singer-songwriter, is throwing a benefit concert at 7 p.m. on Tuesday, July 25 under the Summer Theatre of New Canaan tent.
“It takes a family but it also takes a village,” Warner said. “Webster Bank is covering all costs of the night, and Baldanza, where Nick plays almost every weekend, will provide finger food and desserts. New Canaan Wine Merchants will provide wine and the Summer Theatre is kind enough to donate the tent and some of their interns.”
The concert is free and all contributions will go to Ann Depuy’s care.
Her influence has extended into the wider community, including at New Canaan Library where she worked part-time in circulation as a permanent employee.
“Ann was a beloved team member at the library and her cheerful, energetic nature made her a favorite with the public and the team alike,” Library Director Lisa Oldham said. “We really miss her.”
For Nick Depuy, the concert—the second of its kind, as he played at First Presbyterian Church in New Canaan about 18 months ago—is a way to honor a woman who has “brought so much energy to the community.”
“She was involved in so many things in the town,” he said. “She started a paddle club, a bridge club, a book club, you name it. She taught Sunday school at First Presbyterian, she was on the hockey team. She just kicked ass and is fearless. She really loved life, and, even now, she just appreciates life and being alive. You can still feel her warmth. She’s a beautiful person.”
Her ALS diagnosis came just shy of her sixtieth birthday, and it has completely altered the Depuys’ way of life.
“We’re going on five years of living with this,” Warner said. “It’s put an immense emotional and financial strain on us.”
It’s taken wide support “to keep this going and to basically have the wherewithal to keep her at home, because the only other option is to put her in an institution, which, when you’re on a ventilator, is something I would not wish on my worst enemy,” he added.
Ann Depuy needs to be looked after around-the-clock, and cannot be left alone for more than 10 minutes at a time. Though trips to the doctor and necessary medicines are covered by insurance, home modifications such as an elevator and a roll-in shower, the purchase of hospital beds, and at-home nursing care are not.
ALS, also known as Lou Gehrig’s Disease, has no known cause, cure, or treatments at this time. As many as 30,000 U.S. citizens have the disease, according to the ALS Association.
Approximately 30,000 U.S. citizens suffer from the disease at any given time. Explaining its effect on his wife, Warner Depuy said, “It’s such a debilitating disease, it takes everything away from you slowly.”
“And it’s not like you get anything back, where there are good days and bad days. It’s just constant, it’s like a tank that just keeps rolling over everything.”
Tax-deductible contributions for Ann Depuy’s benefit should be made to Graybeards Ltd., a 501(c)(3) nonprofit organization. Those who cannot attend may send contributions to the attention of Warner K. Depuy at 84 West Park Place, Stamford, CT 06901, and they will be forwarded to the charity on Ann’s behalf.