C.A.S.A DIGNIDAD – A HOUSE FOR ALL
by Marina Kauffman, president of Fundación Habitat LUZ
The first time I went to Barranquitas, I was impressed by the beauty of its surroundings. A hidden place, almost untouched, to which an unfinished path leads but full of visual surprises. To see lagoons with birds reminiscent of the Venezuelan plains, of all sorts and colors, such as the spectacular soldier heron, are among others that greet the passersby.
Nestled on the shores of Lake Maracaibo and producer of a blue crab that is an export delicacy because of its flavor, one which we locals rarely enjoy, Barranquitas is located in a major fishing and livestock area of Venezuela. But its international fame is not for any of its natural beauties or its blue crab production, but because it is the “cluster” with the highest prevalence of Huntington’s Disease (HD), known there as “el mal” (the bad). Frankly speaking, in the fifteen years I have visited Barranquitas I have not come to know a family that amongst their members, didn’t have a story to tell about a relative with “el mal”.
When Factor-H contacted us at the end of 2017, Fundación Habitat-LUZ already had an important work experience in Barranquitas. From 2005 to 2012, we remained constant with different projects working in cooperation with a diversity of national and international organizations, like NGOs, companies, and of the community.
At that time, it was said that Barranquitas had been founded by two couples who had come from a nearby town called La Cañada. According to the stories, one of the women, supposedly European, had HD and was the matriarch who transmitted to her descendants the gene of the disease. So it is not difficult to believe that the small population of 10,000 inhabitants, which is today Barranquitas, has such a high probability among its inhabitants, as we statistically calculated in 2006 for the Technical Diagnosis of the Full Citizenship Program that we carried out, then, for Shell Venezuela S.A.
According to that data, the probability that Barranquitas’ inhabitants may have HD is 84%, which is an extremely high figure. But this needs to be confirmed, which we will soon do with Factor-H and Caritas of Italy through a study specifically aimed at that purpose.
For this reason, when Factor-H proposed to collaborate in promoting social projects in Barranquitas and San Luis, we had no doubts in accepting. After a long pause of many years, our wish was being fulfilled. Finally, we were going to be able to return to that town that had been sown in our hearts.
Going around Barranquitas you find wandering women and men, young and not so young, who walk their streets in a constant “dance” that is not exactly one of enjoyment. The street is also the playground for a multitude of children, who seem to multiply, with similar features and colors, in the middle of a cloud of dust as they move their footballs, barefoot, to follow the sun until it sets.
There, in that reality that is made more extreme by poverty, Factor-H had a dream that we accompanied and shared with great emotion: to be able to create a space, in the middle of Barranquitas, so that people with HD can have a place to enjoy, exercise, be taken care of during the day and perform small productive tasks with their limitations taken into account. It has been conceived to serve about 30 people with HD and allow 6 to 10 caregivers and administration.
This CASA DIGNIDAD (Dignity Home) would be a space covered by a large roof, representing the cultural idiosyncrasy of Barranquitas, and will include all the functional needs required for such a center. Our house will be adapted to the climatic conditions of Barranquitas, very warm and humid, and to the colors of the town. Also, it will have murals and perforated walls that let the breeze go through. At the entrance, the vegetation will be an element of welcome and shade, reminiscence of that environment. CASA DIGNIDAD will open towards a large courtyard that will be a recreational and planting park, for the use of children and adults, but that would also be the focal point of the visuals of the whole place and would mainly favor the typical wandering of our people with HD.
Among its covered areas would be: a space for the development of multiple activities such as workshops, with mobile and fixed walls, equipment and furniture installed for exercises and group activities designed for stimulation; a small open kitchen integrated into the park -as in every house in Barranquitas. The bathrooms would be spacious, and specially designed with all accessibility conditions for the progressive disability of HD, with its own water assortment system obtained from rain, reuse and treatment of gray water and well water. The toilets would be dry, and their waste would be reused as compost in the park. It would have a small infirmary for emergencies, as the village hospital is only about 300 feet away; an administrative office and a room for the person in charge of taking care of the site. Native and reused materials, such as the discarded oil pipelines, would be used for its construction. Many of these ideas come from proposals designed by the students of Arch. Pablo La Roche, some of which are shown on the pictures below.
The CASA DIGNIDAD would be managed by a directive with an important representation of Barranquitas’ own institutions and others like us, who have participated with interest in the process of supporting families with HD. The administrative operation would be in the hands of contracted personnel and volunteers, coordinated by a general administrator.
In 2018, a piece of land was purchased in the town center, with the support of benefactors who knew of Factor-H’s interest. Nacho, Roger and Gianni visited us in December of that same year and together we enjoyed stepping on and walking around that land that was already “property of the dream”, which could not only mean a change in the lives of people with HD, but also for the children and the entire population.
There, in that place that was already the first miracle, we dreamed embraced by the harsh noon sun, children and adults, that soon there would exist a magical place, with flowered doors open to all, which we imagine as a great beating heart that welcomes the anguish and joys of families who, for so many years, have been alone in the effort of caring and accompanying their relatives during the hard process that is HD. Vladimir captured the moment, as a testimony, so that we never forget that dreams do come true…
The land Factor-H purchased in 2018 is a small plot next to the main town square in Barranquitas, Zulia State, Venezuela, the location of the largest cluster of HD families in the world. Here you see the larger Factor-H family in December 2018 on the land we purchased: Roger, Gianni and Nacho with members of the community including some of the kids we sponsor, the members of Fundación Habitat LUZ, Fundación Huntington Zulia, and local doctors and church officials.
Photography: Vladimir Marcano