“I broke down in tears,” Huber tells PEOPLE. “I felt sadness that he would deal with cerebral palsy for the rest of his life, but I also felt gratitude that he could walk. Many others cannot.”
Huber, the daughter of soap opera legend Susan Lucci, exclusively reveals the courageous story of her 7-year-old son, Brendan, in this week’s issue of PEOPLE. Her candid interview comes after years of keeping silent about her son’s condition.
“If I am trying to hide it, how does it look to him?” asks Huber, 40. “I don’t ever want him to feel bad about himself. I want him to feel good and proud and celebrate the way he overcomes challenges.”
Huber’s mom, the star All My Children and Devious Maids, supports her decision.
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“I am very proud of her,” says Lucci, 68. “Good for Brendan, for his mom to speak about him with such pride publicly, as well as to open up a conversation about cerebral palsy. It can only have positive impact and how wonderful for Brendan to know his family is proud of him.”
Huber, who has four children (Royce, 8; Brendan, 7; Hayden, 4; and Mason, 2) with her husband, tech executive Alex Hesterberg, will never know the exact cause of her son’s cerebral palsy. (Cerebral palsy, a neurological condition that affects muscle movement, is often caused by a brain injury in utero or during birth.) Even though she had a normal pregnancy, she recalls “a gnawing feeling that something was wrong.” Then, on the evening of Aug. 16, 2008, when she was 31 weeks pregnant, she felt “the most excruciating pain I’ve ever had,” she says. Doubled over in pain, she nearly passed out and was rushed to the emergency room, where Brendan was born nine weeks early.
Weighing just 4 lbs., 10 ounces, he was immediately sent to the neonatal intensive care unit.
Six days later, Brendan stopped breathing and was immediately put on a ventilator. Says Huber: “I was afraid he wouldn’t make it.”
After five weeks, he came home and Huber focused on his care. She eventually left her acting career to launch her own company Sage Spoonfuls, a line of products to help parents make healthy kids’ food. The career move allowed her to work from home, close to her kids.
At 10 months, she began to notice Brendan was unable to sit up by himself.
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“I knew something was wrong but I was in denial,” she says.
At 19 months, when he couldn’t stand, she took him to a doctor, where an MRI revealed he had cerebral palsy.
The first few years were challenging. Brendan has stiffness and pain in his muscles, walks with an uneven gait and will require physical therapy for the rest of his life. When he was in kindergarten, Huber recalls, “He was tripping and falling in school and didn’t understand why.” That’s when she told him about his condition.
“I told him about why his legs are the way they are and that this is something he has to deal with the rest of is life,” she says, “but it doesn’t define him.”
Today, the 50-lb first grader is a newly minted Cub Scout, a baseball pitcher (thanks to his older brother, Royce, who taught him how to throw) and a very empathetic little boy.
“If anyone falls, he is the first to say, ‘Are you okay?’ ” says his Mom.
Now, she says, “I want to shout his accomplishments from the rooftop. Walking up two stairs of our home without holding on when he gets home from school is the biggest deal ever! I want to celebrate him and for him to celebrate himself.”
His proud grandmother, a longtime supporter of United Cerebral Palsy of New York City says he’s also her inspiration.
“He’s taught me that you have to go forward and that life is a gift,” she says. “He’s a spectacular little boy.”