"They thought we might not want to because of the pain and sorrow we felt, so we reassured them we were more motivated than ever, how could we not?"
Nyla Eliza was born on May 10, 1990 and she inspired her parents, Francisco Sojuel and Maria Argentina Figueroa, to... start Asociación ADISA (in English it stands for Association of Parents and Friends of People with Disabilities Santiago Atitlán).
"Our daughter was born with hydrocephaly. She underwent several operations and as a result contracted meningitis, which left huge side effects and multiple disabilities. Obviously it changed our lives drastically," Francisco confides.
"I used to be a textile artisan, and my dad was one of the first to work the foot loom in our village. My wife Argentina was a teacher. Our new situation made us think that perhaps we were not alone, that maybe there were other parents in the region with children who had a disability and that maybe we could join forces and support each other. We took to the task of finding out and in June 10, 1997, we held our first little meeting where we shared our experiences as parents, and understand others living in the same situation as parents of children with special needs.
"In 1998 we formed ADISA and we began working with the children on the weekends. We did all the legal work to obtain placements for Special Education, we contacted neurologists and physiotherapists, and we began to get offers from people wishing to volunteer and our children began in mainstream schools.
"However, on the first of July of that same year, our beloved Nyla Eliza passed away. That same day, in the afternoon, we received a phone call telling us our project for anti-convulsion medication had been approved.
"The other parents began wondering if we would still be interested in continuing with the project. They thought we might not want to because of the pain and sorrow we felt, so we reassured them we were more motivated than ever, how could we not? Continuing the project gives meaning to our lives, including our daughter's life. It's amazing how a situation such as this one can have such an effect on your life and give it some kind of meaning.
"By the end of 2000, we achieved another goal – my wife's placement as a Special Needs Teacher through our village's Board of Education. This brought us such happiness! Dreams were becoming a reality and, together with Spain's Médicos del Mundo (Doctors of the World) we can count on an teacher's assistant, educational material, and build a physiotherapy and rehabilitation room for those who may need it. The beauty of this is that it all kept coming together as the needs arose.
"The recycled crafts project came as an answer to the question, 'What will the children do when they're too old to go to school?' We began testing the youngsters' abilities and we started recycling glass. They could collect it and then sell it, which resulted in a good economic incentive for the young men and their families. Then we decided to recycle newspaper because there's always a lot of it and at a very low cost, which meant selling prices can also be low.
"There are 14 young people with different capabilities that adore their craft. We have developed different techniques in order to have each one specialize in a particular part of the process, depending on their disability: one person folds the paper, another one rolls it up, and a third person can shape the object. Their spirit for achievement is amazing and here we are – crafting products we hope will be valued for the effort and quality that go into them.
"ADISA now has volunteers coming from the USA, Great Britain, Germany, France and other countries. We have obtained financing for a second special needs teacher and there are now 20 children in the school. We have a 24 hour emergency service, we provide workshops for parents, and many of our children have been integrated into regular schools. In fact we have provided the community with sensitization programs to help them understand and be supportive of children with special needs. There are several programs in the areas of education, health, professional orientation, self-awareness and self-empowerment.
"We have recycling paper workshops, a bakery and a wood workshop.
"Four of our students have participated in the Special Needs Olympics at a national level and they brought back three gold medals, two silver and two bronze! The students' lists of achievements and progress are endless!
"ADISA's mission is to promote the social inclusion in nearby communities and villages of children with different needs, whether they are physical, mental, or sensory. We wish to reach out and offer education, health services and vocational formation to as many people as we can. Our motto is, 'An equal world for all.'"
Francisco and Argentina have unfailingly devoted their lives to this project. Needless to say, the impact they have had on the community is admirable, and their smiles never faded as they told us their story.