A rare disease that claimed the life of a Gorham woman in March has also left other victims – her devastated family and friends who are searching for answers.

Ann Michaud was diagnosed in February with Creutzfeldt-Jakob Disease, a fatal brain disorder. Surrounded by her family, Michaud died at 52 on March 24 at home. An autopsy confirmed the diagnosis.

“Absolutely no treatment for it,” said Gary Michaud, 54, her husband, sitting in the family’s home on Sebago Lake Road in rural Gorham.

Creutzfeldt-Jakob Disease strikes 1 in 1 million people.

Florence Kranitz, president of the Creutzfeldt-Jakob Disease Foundation Inc., in Akron, Ohio, said Tuesday that just 300 cases are reported in the United States each year, but she believes there are additional cases that go unreported. Kranitz, who said the disease isn’t contagious, had no specific statistics for Maine. Dora Ann Mills, director of the Maine Center for Disease Control and Prevention, did not return calls inquiring about the disease in the state.

According to the foundation, there is no known cause for 85 percent of the cases. A familial form, which could be inherited, represents up to another 15 percent of all cases. One form of the disease, representing 1 or 2 percent of all cases, could be acquired through some medical procedures, contaminated surgical instruments, or by ingesting contaminated beef.

“There have been no reported endemic cases” from ingested contaminated beef in the United States so far, Kranitz said.

Creutzfeldt-Jakob Disease belongs to a family of human and animal diseases known as the transmissible spongiform encephalopathies, according to the National Institutes of Health. Spongiform refers to the characteristic appearance of infected brains, which become filled with holes until they resemble sponges under a microscope.

Michaud said after her diagnosis, his wife asked the doctor, “Will it kill me?”

“Yes,” he said the doctor replied.

“It was like someone hit us in the head with a two-by-four,” Michaud said.

Within a month, his wife lost her ability to walk, talk and swallow.

“She went through hell,” Michaud said about his wife’s ordeal. “It’s a bizarre disease.”

Disease a nightmare

In January, Michaud first noticed his wife was having a problem setting the timer on their microwave oven and she became frustrated.

“It was my first inkling something was wrong,” he said.

She called the family doctor, who couldn’t find anything wrong. He said she complained daily that her condition was worsening and she visited a neurologist about the first of February.

After tests, a doctor speculated she had the rare disease. Her husband said his wife cried.

“This is a nightmare,” he recalled her saying.

Ann Michaud was initially given three months to a year to live.

“I want to make it to Rochelle’s graduation,” Michaud recalled his wife saying about their 18-year-old daughter.

But, in early February, she had already begun having balance problems. By the middle of February, her husband said, she needed help to walk.

“It got to the point I had to carry her,” he said, demonstrating how he cradled her in his arms.

He said his wife suffered hallucinations. A fireplace caused her to believe the whole house was on fire.

On other occasions, she said, “The room is caving in,” and “the ceiling is going to swallow me.”

She developed tongue thrush. She lost her ability to talk and swallow.

He recalled his wife asking at 3 a.m. what turned out to be some of her final words, “Am I going to die?”

A supportive mother

Gary and Ann Michaud met at a dance at St. Hyacinth’s Church in Westbrook, where they both grew up.

“We connected right off,” Michaud said.

They married in 1985, moving to Gorham after first living in her home in Limington. They became the parents of three daughters, Katelyn, 22; Ashley, 20; and Rochelle.

Self-employed, Ann Michaud worked 10 to 12 hours daily at home in a professional sewing business. Her father, Cleon Letarte, had been a well-known tailor in Westbrook. She fabricated projection screens for golfing simulators and medical braces. She repaired backpacks for L.L. Bean.

She also helped out an elderly aunt in a nursing home. Despite a packed schedule, she always made time for her own as well as other children.

Family and friends meant everything to Ann Michaud. She was a 4-H and Girl Scout leader and well-known as a soccer mom.

When her daughters played sports, she was there.

“She always came when we went out of state for tournaments,” said Ashley Michaud, who graduated Gorham High School in 2007 and is now a student at the University of Hartford in Connecticut.

Daughter Katelyn Michaud loves horses and performed with the Maine state team at the Eastern States Exposition in Springfield, Mass. Ann Michaud was there, and not just for competitions.

“Mom went three years. She was one of the volunteers,” said Katelyn, a 2005 graduate of Catherinbe McAuley High School in Portland and a December graduate of the University of Maine at Farmington.

Katelyn had three horses, but, according to Rochelle, one of the horses was her mother’s favorite – Duke.

Community support

Friends hosted a benefit April 25 at YourSpace in Gorham to help the family and to aid research.

Beverly Preston, who once worked with Michaud at Sappi, and Ellie Dunton of Westbrook donated $88 from raffling Whoopie pies they had made. During the event, many talked about their memories of Ann Michaud.

Bonnie Butterfield helped take care of her friend in her final days.

“Ann was the most positive, supportive parent I’ve ever met,” Butterfield said.

Judy Boucher of Gorham said Ann Michaud was artistic, creating quilts and crafts.

“No matter what she did, she was good at it,” Judy Boucher said. “She touched a lot of lives.”

Deanna Barrows of Windham grew up with Ann Michaud in the same Westbrook neighborhood. They stayed close friends since childhood. They once played on the same softball team. For the past 25 years, they played Bunco, a dice game, together with a group of friends.

“She loved to laugh,” Barrows said.

Butterfield said her friend’s death was a hard way to go.

“She was a special woman,” said Butterfield, wiping away tears.

“We’re having a hard time. It’s devastating,” said another friend, Michelle Dame of Standish. “To think something like this could strike,” she said, fighting back tears.

Looking for answers

In July, Michaud and his three daughters are traveling to a family conference in Washington, D.C., sponsored by the Creutzfeldt-Jakob Disease Foundation. At the conference, they will meet families of other victims and talk with researchers.

“We need some answers,” said Michaud, who has been searching the Internet for information about the disease.

Michaud said he is grateful for their many friends, his employer and hospice, who all helped in his wife’s last days.

His employer allowed him to set his own work schedule so he could spend time with his wife and family.

“Air Temp has been awesome,” he said.

He said fellow employees donated their vacation days to him so he could be at his wife’s side. They recently handed him a check for $300.

Michaud said he and his wife had plans to retire and travel.

“What do I have to retire for?” he said. “She was a wonderful gal.”

Cutline (Michaud family 2) – Gary Michaud of Gorham lost his wife to a rare disease. He is surrounded by three daughters, from the left, Katelyn, 22; Ashley, 20; and Rochelle, 18. (Ann Michaud 2) – Ann Michaud