In catching up reading some of my blogs in my reader, I read across a lot from Flower Dust and her visit to India with Compassion International. It got me thinking though of places past that I’ve known where situations are similar. Can’t really say a lot of places exist like that in the US and then I remembered the single year I lived in Venezuela. And that one food drive my class did at the American international school I attended.
I remember loading up some trucks and our class (which was only 10-15 teens … that was when I was in 11th grade for the first time) and actually going out to a village. We handed out the food.
I have no pictures to remember it; only a vague memory. And it looked like the pictures and videos (specifically the 2nd video in this post before they enter the hut) of India. The only thing is that I don’t think many around the world really know about this place, except for geneticists and for a specific reason. From the Huntington Disease (HD) Project:
Since 1979, the U.S.-Venezuela Collaborative Research Project, a team comprised of top international doctors and scientists, has been traveling each year to very poor, rural fishing villages along the shores of Lake Maracaibo, Venezuela. We are searching for a cure for a disorder called “Huntington’s disease (HD).” HD is a dominantly inherited, neurodegenerative disease for which there is no treatment. Each child of a parent with the disorder has a one in two chance of inheriting the same lethal affliction. HD is a very downwardly mobile illness. It usually strikes between the ages of 30 to 40, in an individual’s prime productive years. Most individuals in the late stages of illness require enormous assistance. They lose the ability to walk, talk, feed themselves, but are still conscious, aware and know themselves and their families. It can appear as young as 2 years of age and as old as 80 years.
Venezuela has the highest concentration of Huntington’s disease in the world, particularly focused in the State of Zulia. The world’s largest family with Huntington’s disease lives along the shores of Lake Maracaibo. The original progenitor of this family lived in the early 1800’s and left more than 18,000 descendants (more than 14,000 of whom are currently living), many of whom are either affected by the illness or at risk for this devastating and inevitably fatal neurodegenerative disease.
In stark contrast to all they have given the world, these families suffer from extreme poverty, deprivation and duress. They are subject to all of the diseases and devastation of small impoverished fishing villages. In addition, in almost every home, there are people in various stages of Huntington’s disease, from the initial aberrant movements to the prolonged bed-ridden agonal years wracked by unceasing motion but aware and conscious. The children do not go to school because they must care for many relatives incapacitated and dying at the same time. The six year olds must earn a living; by age thirteen they are parents themselves. The density of this illness predisposes toward two individuals with the illness having children. The risk to these children is three chances in four. If they both inherit two Huntington’s disease genes, 100 percent of their children will become affected.
I think of my mother who has Multiple Sclerosis (MS). It isn’t the same as Huntington’s Disease at all, but has similarities as they both affect the brain albeit in different ways. For my mom MS is a a slower decline; she is bed-ridden now (or in a wheelchair) and is less able to communicate. She’s there though – just can’t speak most times. I remember when she had control over parts of her body, but again as time goes on, she has lost control of them. Both HD and MS have no known cure either.
Back to these villages in Maracaibo. There seems to be interest in only one party – the geneticists and those working to find a cure for Huntington’s Disease. Now that’s great! But what about all the people there? What about mercy and grace and compassion for them? I might be wrong… there might be whole outreach and missionary work to them … or not much at all. I only see one person: Dr. Margot de Young – who since 1991, has been working with the Hereditary Disease Foundation as the Director of Research and Treatment for our Project in Venezuela.
She runs the Casa Hogar Amor y Fe (House of Love and Hope). The Casa Hogar Amor y Fe was her brainchild. She helped turn what was a bar called “El Toro Rojo” (the Red Bull) – one of the worst in the city of Maracaibo Ð into a haven for Huntington’s disease families.
The purpose of the clinic is manifold. It serves a completely neglected and overlooked population with no access to medical care. Most of the Venezuelan Huntington’s disease family members have never received any information and education about the importance of basic primary medical care. Also, hospital patients must pay for all their supplies – including pins for surgery – and are sent home even in extremis. Few, if any, physicians would volunteer to make house-calls to these neighborhoods, which have been deemed “impenetrable” even by the police.
My heart breaks.
“Then the King will say to those on his right, ‘Come, you who are blessed by my Father, inherit the Kingdom prepared for you from the creation of the world. For I was hungry, and you fed me. I was thirsty, and you gave me a drink. I was a stranger, and you invited me into your home. I was naked, and you gave me clothing. I was sick, and you cared for me. I was in prison, and you visited me.’
“And the King will say, ‘I tell you the truth, when you did it to one of the least of these my brothers and sisters, you were doing it to me!’