Group Helps Parents of Children With Down Syndrome : Health: Organization reaches out to local Latinos, for whom incidence of disorder is nearly twice U.S. average. Language and cultural barriers keep many women from seeking support.
Josefina Sierra’s eyes glittered as she watched the stage full of children. Ducking in front of other parents, she snapped a quick photo of her son, Carlos, 10, as he recited the lines he had memorized for his leading role in the pageant.
“I’m so proud,” Sierra said.
The scene is common for the season: children performing a Nativity pageant before beaming parents. But the stars of this show were children with Down syndrome, a chromosomal disorder that affects physical, intellectual and language development.
The holiday event attracted more than 300 people from throughout the Los Angeles area. It was sponsored by Fuerza (Families United in Response to Down Syndrome and other Alterations), a Huntington Park-based nonprofit support group to help Latino families.
Down syndrome occurs in one of every 800 to 1,100 births, according to the National Down Syndrome Congress. But at Los Angeles County-USC Medical Center, where more than 96% of newborns are Latino, the rate is nearly double.
Between 1974 and 1988, the number of Down syndrome children born to Latino mothers was 1.6 per 1,000, according to a 15-year study by Dr. Miriam G. Wilson, who served as chief of the genetics division of County-USC Medical Center during that time.
Last year, about one in 500 Latino children born at the hospital had the disorder, said Dr. Atsuko Fujimoto, current chief of the genetics division. Many Latinas do not seek prenatal care, may not know they are carrying a Down syndrome baby and are less likely to terminate a pregnancy, she said.
Because of language and cultural differences, Latino families are often unaware of support organizations and do not seek help, said Rosario Marin, who in 1987 founded Fuerza, formerly called Padres (Parents of Persons With Down Syndrome).
“When I had my son Eric and began attending meetings and conferences about Down syndrome, I was the only Latino,” Marin recalled. “I thought: ‘Where are all the Hispanics? Am I the only one with a Down syndrome child?’ ”
Fuerza fills a need for Latino families by providing free parent-to-parent counseling, information, referrals and other support services that are sensitive to Latino culture, Marin said. An annual Mass attracts more than 1,000 people, and the organization now mails its newsletter to 1,200 families in the Los Angeles area.
Parents say that Fuerza helps them cope with the difficulties of their children’s early years.
“I cried a lot when I found out what Down syndrome was,” said Lorena Ochoa, 27, mother of Jennifer, now an impish 6-year-old. “I didn’t tell my mother or anyone in my family, I didn’t want to accept that Jennifer had Down syndrome.”
When Jennifer was 2, Ochoa discovered Fuerza, and realized that her daughter could learn to walk and talk and go to school like other children.
“She’s very intelligent,” Ochoa said. “She’s very friendly and everybody likes her.”
Fuerza is a volunteer organization that has no budget, said President Michael Sierra, Carlos’ father. The group needs funds but has focused on human services instead of fund raising.
Right now, Sierra said, the organization has only one goal: “To do more.”