Day 5: Ode to Joy

Hola amigos,

Our journey took us to Chimaltenango today to visit an orphanage and school for children with special needs, called Los Gozosos (Joy-filled homes). You can check out their website at: http://losgozosos.org. This organization was created 9 years ago to provide a forever-home for children with disabilities and help them reach their full potential. They are a Christian based organization funded entirely by donations. Los Gozosos is the only orphanage in Chimaltenango that accepts children with disabilities. Today we had the opportunity to sit with 10 children with special needs and 6 of their nannies/therapists to learn more about their history, and to answer any questions they had for us.

First we learned all about their daily activities, including their school program, which involves occupational therapy and physical therapy. We also learned about each child's story and where they came from. The children were extremely sweet and friendly - as soon as they saw us they ran into our laps and admired our clothes and accessories.

After learning about the children and their daily lives, we described our profession and asked if the therapists had any questions for us. At first we heard crickets, and they suggested we come back and educate the parents of these children on the different syndromes. However, when asked if they were interested in learning about some of these syndromes themselves, they were eager to hear more and the questions started flowing. Zoe explained the genetics of Down Syndrome and Fragile X as well as the role of folic acid in preventing midline defects, including cleft lip and palate (which seemed to be a significant concern). Many of the therapists were very interested in learning about folic acid, especially why they should be taking it and when to start. One therapist in particular mentioned a disagreement she was having with her sisters. She had been taking a multivitamin that contained folic acid, even though she was not yet married or in a relationship. Her sisters told her that she didn't need to take folic acid until she was married. She told us that she is now eager to take the new information back to her sisters to prove them wrong and to convince them to start taking folic acid themselves. Success!

Helen is skeptical of Zoe's description of Down Syndrome

We came out of the meeting feeling that things went really well. Once again, folic acid became the focus of the conversation; another indication that information is available, but awareness is lacking. The overall impression we got from Los Gozosos was that these children are extremely loved and well taken care of. We all agreed that the experience was a meaningful one and we were glad we went!

GenetAssist with the Los Gozosos children and therapists