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Paran: A Town of Peaches and the Blind

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Paran is a small community that rests at the foothills of the Andes in Lima, Peru. It is an isolated little area surrounded by mountains and home to only 300 people, and one in eight of those people are blind.

The unusual rate of blindness in Paran was discovered about two years ago when a mining company sent a team of doctors to the area as an outreach effort. Most of the Paranos had never visited a doctor before then, and therefore had no one to report the condition to although they understood it was abnormal.

The blind and their families were hoping for treatment or glasses to cure the affliction but they were given an even more complicated prognosis. Doctors found that the condition was caused by a genetic mutation in the X chromosome. This means that women can carry it, but men are more likely to express symptoms.

The condition works by knocking out cells in the retina like pixels in a screen. Victims experience blurriness in their vision that gradually worsens until all sight is lost. Onset takes place between the ages of 10 and 40 and the ability to see at night is lost early on.

While the discovery of the disease, named retinitis pigmentosa, was a breakthrough for the people of Paran whose ancestors have dealt with the condition for over a hundred years, many feel that they were given life-changing information and then abandoned.

The discovery of the disease two years ago brought a lot of attention to the area by doctors and journalists alike. When the doctors left and Paran became yesterday’s news, the people were left without a cure and a bad reputation. What was once known as a village with sweet peaches became the town of the blind.

Even to this day the people of Paran carry a stigma and are treated as outcasts by the surrounding areas. They are unwanted out of fear of contaminating other populations and told to move far away if they choose to leave their community. The women of Paran are avoided as spouses out of fear they may pass the disease onto their children.

However, despite what may seem like bleak circumstances, the Paranos persist with amazing vigor. With no government assistance or facilities fit to accommodate blindness, the men in the area prepare for a life of darkness before total blindness sets in. People like Lorenzo, an elderly man with nobody to care for him, make the two-hour trek up and down the rocky hills they live on to the village center every day on their own.

Another man named Agapito Mateo and his two brothers are all blind. Agapito is a pastor and a farmer who never stopped tending to his peaches after losing his sight. He thanks God for his ability to continue working but insists that those less fortunate need government assistance. Meanwhile, people like Agapito work to uphold the reputation that Paran may be home to a good number of blind men, but they also grow really sweet peaches.

– Edward Heinrich

Sources: Oscar Durand, PRI, YouTube

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New Hope for the Deaf and the Blind in Kenya

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This year, Sense International, an organization targeting sensory disabilities in developing nations, launched its first deaf-blind curriculum in Kenya. The program will formalize education and promote specialized home care for over 17,000 deaf and blind children in a country with no precedent for disability education.

Sense International Kenya has been at work since 2005, when teachers began protesting in earnest to the Kenyan Institute of Education about the lack of programs and metrics to guide and measure deaf-blind education.

Kenya currently has 10 centers of education for the deaf-blind—in a country with a population of 42 million. The great demand for specialized care coupled with a total lack of curriculum has left many classrooms in chaos. Teachers with the best intentions, but no tools, have no recourse.

But the problems have roots far deeper than a lack of curriculum. For many families, the distance is just too great or boarding fees too expensive to enroll their children in the few special learning centers.

Without care or intervention, struggling families often can’t help but marginalize their deaf-blind children. Thousands of disabled people live shuttered, lonely lives due to a lack of education.

Sense International addresses these problems on several fronts. First, it recently pioneered a deaf-blind education program in Kenya, fully equipped with material and performance gauges on every academic level. It built the curriculum based on studiously researched input from parents and teachers of the deaf-blind, as well as established practices from its operations around the world in countries like Romania, Peru, India, and Uganda.

Sense also works with community organizations to ramp up specialized care for children with severe disabilities. They provide home-based education and therapy, train parents to care for their disabled children, and connect families with experts and organizations that offer advanced support.

Yet, perhaps most important of all, Sense advocates for policy geared toward the deaf-blind. For example, Tanzania, one of its countries of operation, currently subsidizes transport costs for disabled children to and from special learning centers. Sense is pressuring Kenya to adopt similar practices.

The notoriously bureaucratic Kenyan government presents another problem in itself. To combat this, Sense is cutting away at the red tape prohibiting reform by maintaining constant contact with leaders on sensitive issues.

“This project has shown just what can be achieved with political will and the expertise of organizations such as ourselves,” reports Edwin Osundwa, the country representative of Sense International Kenya. “We are proud of what has been achieved and are now keen to repeat the process for home-based education.”

– John Mahon

Sources: Sense International, The Guardian
Photo: The Guardian

LDS Charities Help Blind Child

The charity division of the Church of Jesus Christ of Latter Day Saints (LDS) works to provide sustainable solutions to global poverty. In doing so, the Utah-based religious organization has invested a significant amount of time and money in global programs to alleviate conditions for communities facing food, water, and medical supply shortages. For one father, LDS donations represent the difference between a child’s health and cancer.

John Rey Alegro is a two-year old child in the Patag District, Catbalogan City, Samar. Until recently, John Rey suffered from a congenital anomaly in his eyes. The anomaly, or retinoblastoma, plagued the young child since birth. Because he and his family live in a rural community in the Philippines, the condition had gone untreated.

Just recently, John Rey received an operation on the tumor in his eyes that, if successful, will free the child from all future complications. Though his sight will not return, LDS Charities made it possible for the family to sigh a breath of relief in knowing that their child has a strong chance of leading a somewhat normal life, albeit in visual darkness. Had the operation been performed at birth, John Rey would likely still have his sight.

The heartwarming story of John Rey is only one example of the highly valued work being done by LDS Charities in places like Samar. Rural communities often lack sufficient facilities to perform these complicated surgeries, which leave patients to deal with debilitating conditions on their own. This specific surgery, part of the LDS mission to provide sustainable solutions to poverty, was also a hands-on lecture given to local surgeons by the LDS medical representative.

The idea behind the hands-on lecture program is to not only provide much-needed medical care to the poor, but also educate medical staff in poor and rural communities. At least theoretically, local doctors are now able to address complications of this particular kind. Eventually, the program will reach a point at which local medical staff are capable of operating on their own and meeting the basic needs of the community.

– Herman Watson

Sources: Manila Channel LDS Charities Mormon Newsroom
Photo: LDS