August 13, 2012 12:00 PM

For years Mary Valastro helped out at the family business: Carlo’s Bakery in Hoboken, N.J., run first by her husband, then her son Buddy Valastro. She kept busy doing paperwork and tying up boxes of cakes, cookies and cannolis. But when she began feeling weakness in her fingers, Mary-who also appears on Buddy’s hit TLC reality show Cake Boss-was sure she knew the cause. “I thought it was carpal tunnel syndrome. I had the surgery and everything,” she says. “It just never got better.”

Increasingly frustrated by the weakness in her hands, which hindered her ability to write or even button her pants, and alarmed when the feeling moved to her legs, Mary, 64, consulted four doctors for a diagnosis, finally visiting the Mayo Clinic with Buddy, 35, last summer for answers. The diagnosis came as a shocking blow: She had amyotrophic lateral sclerosis, or ALS. Better known as Lou Gehrig’s disease, it is a rapid degenerative nerve disease that leads to loss of muscle control. “As the doctors told us there was nothing they could do except make her comfortable, it was like a truck hit us,” says Buddy, sitting close to his mom on the couch in her Hoboken high-rise. “I thought, ‘Why, God, why?'”

The diagnosis came as Carlo’s Bakery had finally skyrocketed after a lifetime of hard work. Buddy’s father, Buddy Sr., had died in 1994, when his son was just 17. Dropping out of school to run the bakery as a teenager, Buddy eventually turned it into an international tourist destination thanks to Cake Boss, which debuted in 2009. All the while Mama Valastro “was singing and dancing around the bakery, greeting customers and managing everything,” Buddy says. Mary, who retired in 2010, “got remarried to a nice man, and they were going to enjoy themselves,” Buddy says. “She didn’t deserve this.”

Suddenly adjusting to a slower-pace lifestyle has been devastating to Mary. “I was always so active. Now I can’t even walk across the street because I could collapse,” she says, her voice shaking. The family is relieved that her form of ALS is slower progressing than others, which can quickly impede speech and the ability to breathe independently. (Most people with ALS die from respiratory failure within five years of the onset of symptoms, though 10 percent of patients survive for more than a decade.) Even so, Mary is blunt about her prognosis: “It still sucks.”

As Mary is increasingly in need of help with everything from cutting her food to brushing her hair, “taking care of her is a group effort,” says Buddy. “That is, if she’ll let us.” Buddy, his wife, Lisa, and his four sisters all pitch in to help Mary’s husband, Sergio Piccinich, with day-to-day care-and emotional support. “We’re trying to get her to understand that it’s okay to use a wheelchair,” Buddy says. “The only fights we’ve had have been us trying to get her more help and her saying she doesn’t want it.”

Although Buddy researches ALS treatments every day online in hopes of a breakthrough, the family is prepared for the reality of Mary’s situation. “My main concern now is to keep her fighting and moving and keep her spirits up,” he says. “You have to have the will to fight.”

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