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Susan and Brad Stillman grew concerned following their son Benjamin’s birth in September 1998. He was fussy and congested, had difficulty breastfeeding and didn’t take to the bottle.
Talia Hill, 11, was born with cerebral palsy, epilepsy and bone deformities. She is hearing impaired, speech impaired, mobility impaired, fine-motor impaired and neither her two arms nor her two legs are the same length. In her short life, she has had multiple surgeries, a hearing aid and has had to take several kinds of medication on a regular basis.
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Thousands of Jews in Southern California, among hundreds of thousands worldwide, carry the gene for a fatal disease that's as prevalent as Tay-Sachs and just as devastating, but local Jewish leaders have failed to let the public know that the disorder exists -- and is now preventable.