This past weekend 30 families and their children with disabilities flocked to a beautiful retreat center outside the city, thanks to Joni and Friends and another local non-profit organization in town.
MC (one of our family medicine residents) and I were invited to give a lecture on health issues and do medical consultations.
MC did a fantastic job doing her first lecture as well as first translation of both the slides and verbal interpretation for me.
More importantly, we were humbled by these families.
In an environment where a child with a disability of almost any kind is often barred from enrolling in preschool or elementary school, where orphanages are full of abandoned children with simple or complex congenital anomalies, and where therapies and special education are hard to come by–
These families have chosen to keep their child with cerebral palsy, neurological disorders, autism, low IQ, deafness or seizures.
They have chosen to pay the cost of keeping this one they love, sacrificing the approval of their family and neighbors, the chance for their child to attend the best universities, a comfortable marriage.
As we met some of these parents individually and heard their stories, I also realized what a hunger they have for reliable, up to date and useful information about their child’s condition.
We were literally bombarded with questions from all sides most of the day, ranging from how to help their child walk better to is there a cure for this condition.
The concept of a medical home, such as we know it in the United States, is unknown here.
Only the patient coordinates which specialists to see, and when.
Nobody reminds them when to go and get a follow up test.
And many of these families have no access to the internet and the plethora of (even inaccurate) information about their diagnosis due to financial constraints.
Those in our group were all below the poverty level, according to the organizers.
Absolutely amazing, these precious children and their families.