“Upon closer questioning of his mother, it turns out that the child’s heart murmur had actually been diagnosed by a local clinic shortly after birth. However, the doctor who discovered the murmur had told her that since Billy was a “special child” it was better not to do anything about it. Fast forward two years – Billy is severely malnourished and in serious heart failure, all because medical staff had made a peremptory judgment about what was and was not possible for a child with special needs. A judgment that was exceedingly unjustified, both because we know that children with Down’s syndrome can lead extremely productive and high quality lives and because Billy’s heart defect was one of the most common and simplest to repair.”
For the majority of people in rural Guatemala, special medical needs such as complex surgeries or care for special needs children are out of reach. The resources, medical centers, and money for seeking expert help are simply not available. Often, our patients are not even aware that state of the art facilities, therapies and medication are available just a few hours away in Guatemala City.
At Maya Health Alliance, we believe that every human being has the right to reach his or her health potential. That’s why we are especially proud of our system for facilitating complex surgeries and treatment for all of our patients. In unprecedented ways, our organization has created the infrastructure to bring the neediest rural patients to expert teams in Guatemala City. For each case, our patient care team works around the clock to provide translation, accompaniment, and transportation for our patients. We also cover the cost of surgeries, labs, medications and treatments. The most vital aspect of this work, however, is our personal touch, as our patient care experts literally hold our patients’ hands from consult to surgery, translating test results into their language, breaking good or bad news to family members and helping our patients feel safe in the huge, urban sprawl of the capital – far away from home and family. This ‘system of accompaniment’ is necessary to overcome the cultural, linguistic, and discriminatory factors that often deter rural Maya from seeking advanced care at all.
Not only has Maya Health Alliance bridged the gap to world class medical care, but we have also offered hope and acceptance to parents whose special-needs children are often ignored by society and assumed to be hopeless cases. We educate these parents on their children’s condition, showing them how their kids can lead highly productive lives.
Billy had his surgery, and is doing extremely well. In all, our staff devoted some 200+ hours of time to this case – both direct medical care, and advocacy, relationship building, and accompaniment. At Maya Health Alliance, we are delighted to help facilitate such cases, and we strongly commit to providing excellent medical care–especially to “special” children.
Cost of Program: Our estimated annual cost of this program is $52,500. With an estimated 200 cases expected annually, the cost amounts to approximately $250 per case.