Accounting for every moment when time is too, too short - Celebrity chefs host benefit for Warwick family March 19

Warwick — The love between a mother and her child is an amazing one, filled with joy and devotion. Kerryann Smith, like most mothers, knows the depth of that love. She is devoted to her two daughters, Kara, 7, and Kaley, 2. Smith also knows the heartache of loving a child with a disability, one that profoundly affects her daughter’s life, as well as that of her entire family. Kaley seemed like a normal baby when she was born Dec. 13 2005. Just four months later, the world changed. Smith, a former emergency room nurse at Good Samaritan Hospital in Suffern, noticed that Kaley missed some developmental milestones and checked with her doctor. That’s also about the time Kaley had her first seizure. Not long after, she was diagnosed with lissencephaly, a rare brain malformation where the brain surface is smooth, lacking the ridges and valleys necessary for normal brain function. The name lissencephaly comes from the Greek words “lissos,” which means smooth, and “enkephalos,” which means brain. A sense of touch It is a disorder that leaves a child’s brain development at the stage of a three-month-old. When she was diagnosed, her doctors didn’t think she would live to see her second birthday. “Kaley has about 10 seizures a day now,” said Smith, down from a time when she had up to 50 daily. “She takes five different seizure meds a day.” Kaley also is prone to respiratory infections. She’s had pneumonia numerous times in her short life. Last November, a trachea tube was inserted to help ease her infections. Smith sees her struggling, and knows that love alone won’t save her little girl, although it has certainly helped bring joy to her world. Kaley smiles at her big sister, Kara, her dad, John O’Leary, as well as her mom. She reacts to singing. And she loves the sense of touch. “Kaley used to coo and raspberry but she can’t anymore,” said Smith. “She loves the sense of touch. She reaches out to you. She definitely lets you know she’s there. She’s just so cute.” A chance meeting The financial burden, coupled with the emotional one, can be devastating for a family. Last year, Smith met Christine Nunn, a chef from New Jersey, at a party. Nunn met and immediately fell in love with Kaley and came up with an idea: She enlisted the help of Sara Moulton, a former Food Channel chef and held a benefit to help Kaley’s parents with the financial burden of her care. They raised $13,000, Smith said. Next week, they’ll be doing it again. Moulton and Nunn will host a gourmet dinner at the Ridgewood Women’s Club in New Jersey. Tickets are $100. “Kaley has made us appreciate our time,” said Smith. “I treasure every minute I have with her and my family.” Kara, too, has been affected. This big sister doesn’t tease her younger sibling. Instead, she helps suction her trachea tube. She sings to her and makes her smile. Living with a disabled sibling also brings a certain understanding to a child. Kara knows how difficult life can be for a kid who is sick. So, last month, she donated her beautiful blonde hair to Locks of Love, a non-profit group that makes wigs for children suffering from cancer. A gift of time The family has also been blessed with the generosity of strangers, not only in the monetary sense. “Dr. (Dominic) Berlingieri has been wonderful with Kaley,” said Smith, referring to the girls’ pediatrician here in Warwick. “He shuts his office and comes over to our house whenever we need him. He makes weekly or biweekly visits, whatever we need.” Smith gave up her career in the ER to take care of her own daughter. The lessons she learned there have given her a whole different perspective of her life at home. “I saw tragedy so much in the ER,” she said. “I saw people totally unprepared when something devastating happened. I get to spend so much time with Kaley. I’ve been given such a gift to spend this time with her; to appreciate it. We have an incredible bond.” Want to help? Donations in Kaley Smith’s name made be made to the Bergen County United Way, 6 Forest Avenue, Paramus, N.J. 07652. Seats for the benefit may be reserved by calling 201-262-5505.