A MAN WITH SPINAL MUSCULAR ATROPHY IN A THIRD – WORLD COUNTRY

Julio was born on March 5, 1949, in a poor neighborhood of Lima, Peru, in a time where most houses had no electricity and radio music was a luxury only afforded by the few. The television had not yet come to the country and Internet was unimaginable.

Julio grew up in a time quite different from the present day. Then no one could explain to him why he fell down while running or going up stairs. Physicians checked him and continued saying to his mother Julia “Don’t worry. It is only his nerves.” However, he continued falling down. In 1967, when he started an engineering career, he was told at the National Institute of Rehabilitation that he had Kugelberg Welander Spinal Muscular Atrophy and this condition had no cure. Up until this time he had not seen people like him. In this hospital he saw people with different neurological conditions and in different phases of their diseases. He began to understand how hard his life would be if he fought this battle on his own. That is, without means and without support from the government.

Time put an end to the engineering career and he stayed at home where he shared what he had learned with young people fighting to overcome the poverty circle in which they had been born.

Julio had to accept the continual functional loses in his mind and heart, figure out new ways to do things that before he had taken for granted, and to ask help from others in order to survive through difficult times. Faith and hope kept him going in a developing country where support services were not available. However, a miracle was taking shape.

He taught himself the English language to communicate with other people and programs around the world about SMA. This began during the 1980’s, and he learned through specialized magazines that people with severe disabilities were joining the work force in developed countries with the help of computers, and that adaptive technology was making their lives easier. For a heart that knows no bounds, he had to make connections and get additional information so he could gain access to available technology in Peru.

In 1987, powerful forces went to his aid. Jeanie Schiefelbusch, then a volunteer at the Kansas-based Christian Foundation for Children and Aging visited his home with José Mizzoti, parish priest of the Visitacion Church in Lima, Peru, to start a breakfast and lunch program sponsored by the American Foundation for poor children living in the zone. This same year, Liliana Mayo, Director of the Ann Sullivan Center, a school for children with developmental disabilities, also visited his home and gave him a chance to work at the Center. First he had to teach himself to work with both the DOS and the Windows systems. Through the years Julio has been in charge of translating training materials for professionals and families of people with different abilities, entering data about grades and attendance for parents, and other additional tasks.

At the present time, people with disabilities can learn about their conditions and current research by navigating the Internet. They also can correspond with role models who can encourage them to locate resources and provide psychological support, especially in developing country where people with disabilities have limited resources.

Julio can no longer write by hand and is having serious trouble typing. He is looking for technology solutions to assist him with his motor skills and computer work. As in the past, with the help from the people God sends to Julio, he will continue to knock on doors to get what he needs to continue making a difference in his life.
His mother Julia is no longer on this earth but she lives in his mind and heart and continues saying to him “The SMA has stolen your strength but it has not touched your freedom to be independent and live your life. You can my son.” Life is harder than before but the real battle is just starting…

By: Julio Chojeda
juliocht@yahoo.com