Friday, Aug. 2, 2002 | 2:24 a.m.
WEEKEND EDITION: Aug. 3, 2002
Having a child born with a birth defect can be a parent's worst nightmare -- a nightmare that continues daily as parents struggle to find physical and psychological care for their child.
It's a nightmare that Lili Claire Foundation founders Keith Resnick and Leslie Litt-Resnick experienced personally in the loss of their 5-month old daughter Lili Claire in 1997.
And it's a nightmare they want to transform into a new kind of dream for individuals and families dealing with Williams Syndrome, Down syndrome, autism and other neurogenetic birth defects with the Lili Claire, University of Nevada, Las Vegas Life Skills Center.
"Our goal is to let the parents know, 'Listen, your hopes and dreams for your child are different from what you expected,' " said executive director Keith Resnick, who has helped the foundation grow since its inception in 1998. " 'But that doesn't mean that this child can't bring a tremendous amount of joy to your life, can't lead a wonderful life. Here is how we can be of service to you.' "
The new center, which broke ground July 22, will duplicate the services offered at the Lili Claire Family Resource Center at the University of California, Los Angeles while adding life skills and job training services to aid individuals from infants to adults with neurogenetic diseases. The foundation's goal is to support the families with medical services, counseling, education and job training to help integrate the individual into the community.
The center's unique partnership with UNLV will also give special education students hands-on experience working with children at the center.
"They are building a place for them to have a fulfilling life, to have experiences that other people are having," said Denise Kresco, a Thousand Oaks, Calif., resident. Her 5-year-old son, Brett, has Williams Syndrome and has benefited from the Lili Claire center in Los Angeles.
The Lili Claire Foundation helps families such as the Krescos alleviate some of their daily burdens in caring for their son. The foundation has helped them understand their son's syndrome, know his strengths and weaknesses and know how to navigate through the bureaucracy of school and social services to get Brett the care he needs, the Krescos said.
"We know our son will always have a disability, but we want to do everything to help him reach his full potential," said Steven Kresco, in Las Vegas last weekend to support Lili Claire's benefit concert with Hootie and the Blowfish lead singer Darius Rucker.
The Family Resource Center serves as a "one-stop shop" for parents seeking answers and aid for children diagnosed with a neurogenetic birth defect. In one sitting, parents can meet with the program director, a medical doctor, psychologist, nutritionist and other experts and get all of their initial questions answered, Resnick said. They then have several contacts, as well as access to ongoing classes, counseling and an extensive research library, to help them care for their child.
"When you get diagnosed with a child with a disability, you enter a different world you aren't ready for," Steven Kresco said.
The Kresco family said they got a wealth of information from the UCLA center, having previously bounced from expert to expert to try to discover what was wrong with their son. Brett suffers from the heart ailments associated with Williams Syndrome that the Resnicks' daughter died of after 18 hours of open heart surgery.
Williams Syndrome, a rare birth defect occurring in about one in 15,000 births, is caused by a small deletion of chromosome seven that leads to the absence of about 20 genes, said Dr. Colleen Morris, professor of pediatrics and director of genetics at the University of Nevada School of Medicine. She was part of a team of scientists who developed a diagnostic test for the syndrome five years ago and will be helping design the Las Vegas center.
Children with Williams Syndrome usually suffer from mental retardation and learning disabilities, but they also have amazing social skills, good auditory memory, and language and musical talents, Morris said.
"These children have so many talents that are untapped, and now they are not going to be pushed into the sidelines," Kresco said. "Lili Claire is forging a frontier and we're glad to be a part of it."
The Life Skills Center can also help in analyzing the strengths and weaknesses of each individual for job training. A transitional director will then help secure employment and work with the young adult and the employer to make sure the transition is seamless, Resnick said.
"We want to make sure it's a success for the adult, but also a success for the corporation," he said.
Much of the success and growth of the foundation has come from its celebrity supporters. Keith Resnick worked in the entertainment industry before he went to work for the foundation full-time and his wife Leslie Litt-Resnick continues to use her contacts as the casting director for the hit NBC comedy "Friends" to support the foundation.
Local entertainer Danny Gans -- whose name will appear on the Life Skills Center -- has been the "celebrity anchor" for the foundation's work in Las Vegas, Resnick said. The Mirage comedian has agreed to donate the proceeds from one show a year to help keep the center operational, Resnick said. They are still working to raise the $500,000 building cost.
The exponential growth has also been due in large part to a tremendous need for the services Lili Claire offers, Resnick said. The UNLV genetics center sees about 600 individuals with neurogenetic birth defects each year, Morris said.
"Frankly, there are not enough programs and services in the community serving children with neurogenetic birth defects and serving their families," he said. "So the growth was inevitable just because there was such a demand for these services."
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