Ellie Valdez-Honeyman and Maria Castillo had something in common when they met more than a decade ago: They were raising children with disabilities.
They had trouble finding information in Spanish to help them cope with their children’s needs. So with no money and few organizational skills, the two started Grupo VIDA, an acronym for Venciendo Incapacidades y Desabilidades con Amor, or Overcoming Handicaps and Disabilities with Love.
“All we really had was each other,” Valdez-Honeyman said.
In 1989, the women held their first meeting. Ten families attended. This year, more than 275 families throughout Colorado participated in the group’s annual medical and education conference in October.
“We want to empower families with information, because they have no visions of a future for their children,” Valdez-Honeyman said.
The women met at Laradon Hall, a residential and educational program for people with developmental disabilities. Valdez-Honeyman directed an early intervention program while Castillo worked as a preschool assistant and language interpreter. Their children were students there.
Valdez-Honeyman, whose family roots can be traced back several generations to the San Luis Valley, raised seven children, four of whom have disabilities, including three daughters with Down syndrome.
Castillo’s son, Jesús, was diagnosed 20 years ago with Hurler-Scheie syndrome, which damages joints and internal organs.
Before she learned English, Castillo struggled to ask doctors about her son’s health. During one appointment, a doctor handed Castillo a book written in English about the rare syndrome and assumed she could comprehend the syndrome by looking at photos of patients who had deformities.
“I took the book home and I cried,” Castillo said. “It left me feeling very intimidated.”
Parents who have children with developmental disabilities face many challenges and obstacles while seeking quality health care, education and support for them. But for parents of children with special needs who have language barriers, the obstacles can be even greater.
“Access to medical services exists, but is very limited,” said Pilar Cook, a registered nurse who volunteers with Grupo VIDA.
Cook said many poor families have little or no health insurance. “We see parents struggling to get through the system,” she said.
Today, Grupo VIDA is run by a committee of 15 women volunteers including Valdez-Honeyman and Castillo.
The grassroots, nonprofit group keeps in contact with professionals who work in medicine and education, drawing on their expertise.
The group has received small grants from Early Childhood Connections of Adams County and this year received a small grant from the Colorado Department of Education for the annual health conference.
In 1997, hoping to save other Spanish-speaking parents the frustration Castillo had endured at an English-language medical conference, she and Valdez-Honeyman held their first conference in Spanish.
“We want them to be able to identify with people who are going through the same things as we are,” Castillo said. “We don’t want them to feel isolated and alone.”
In addition to health and medical information, the group provides minimal emergency assistance by helping families with energy bills, diapers, medical equipment, food, car repairs and funeral expenses.
The women at Grupo VIDA have become comadres (godmothers) to the families they serve because they give them emotional and moral support when life becomes difficult.
Luisa Diaz lost her 2-year-old son, Isaia, to a rare heart condition.
Diaz vowed to keep her son’s memory alive by helping others, so she joined Grupo VIDA.
“It has become my mission,” Diaz said.
Staff writer Annette Espinoza can be reached at 303-820-1655 or aespinoza@denverpost.com.
