“We would meet like once a week,” says Gabriella, “and we’d have to have a chapter done.”
“Because she was like our teacher,” Tiziana says, “it was like homework. You don’t want to question the teacher.”
The girls say their family’s “village” approach to caring for and encouraging Dani set an example for them. Dani required occupational, physical and speech therapy as well as social skills and other activities, which required her mother and other family members’ time and patience. Dani does horseback riding therapy, as well as gymnastics and speech therapy.
Dr. Pinera-Llano says after Dani was born, she began to look for resources to help her daughter. She and a small group of friends, all mothers of children with Down Syndrome, lamented that there was no organization in Miami to provide education, resources and support to help families and children with Down Syndrome.
They founded the Down Syndrome Association of Miami. The girls will donate the money from book sales to the association. They hope to fund a large activity for the children, which Gabriella hopes will be a swim with dolphins.
According to the Centers for Disease Control and Prevention, about one in 691 children, or 400,000 people in the United States, have Down Syndrome, a disorder caused by a chromosomal defect. Children born with Down Syndrome have 47 chromosomes rather than the normal 46. An extra or partial copy of chromosome 21 changes the course of development.
The most common physical attributes include low muscle tone, small stature, an upward slant to the eyes and a deep crease across the center of the palm. People with Down Syndrome experience developmental delays and mild to moderate cognitive delays.
The girls were in kindergarten when Dani was born, and they didn’t notice her disability.
By age 9 and up, the age group they are targeting, things change, they say.
“Now is when their innocence goes away,” Gabriella says. “That’s why we wrote the book.”