65 Years with Spinal Muscular Atrophy: A Miracle in Peru

Translated into English by Julio, with the help of his friend Matt

I have just turned 65 years old and I still can’t believe it, that I have reached this age. It is a miracle come true, because I was born with a progressive neuromuscular condition called spinal muscular atrophy, not in a developed country where people with severe disabilities have a system to help them deal with the increasing needs and secondary conditions caused by this devastating disease, but in Peru where severely disabled people are on their own.

My mother Julia and me (in 1994)
My mother Julia and me (in 1994)

In spite of these real differences, I was blessed by God because HE gave me an extraordinary mother who taught me to fight against adversity since I was a child, and helped me strengthen my spirit through her own living circumstances, which ended up being very important in this fight with SMA over the long run. Even, in her old age, my mother Julia, who had been fighting with Parkinson’s disease for more than a decade, broke her tibia, fibula and hip. At that time she was 82 years old but never surrendered.  Instead she did all what she had to do to get up again and walk around the place we both lived by pushing a wooden chair until she got a walker. When she could not do this anymore, she used to wait for me, seated in her wooden chair, until I returned from work. Then she rose to her feet and with her walker she went to the kitchen to fetch me a cup of tea. She felt tremendously happy to help her youngest son in this way. What memories she left me! What lessons to apply to my own life!

She reunited with our Lord on 5 September 1998, but she continues living on in my mind and my heart, and I even see her in the eyes of my older brothers Miguel and Cesar, who still find time in spite of their own chronic health problems to visit me at the Ann Sullivan Center where I live, and in the eyes of my sister Rosa, who is dealing with a serious health problem. I still remember vividly when I was hospitalized in 1996, fighting for my life for 53 days in the ICU until I recovered miraculously. The love and faith of a mother, the support of brothers and the prayers of so many made it possible that God would grant me additional years in this life. All of who were my primary caregivers are no longer young and cannot take care of me anymore but I know that they will be with me to the end.

My mother Julia giving me a cup of tea (in 1997)
My mother Julia giving me a cup of tea (in 1997)

Here retelling these stories and occasions for thanksgiving, I recall Jeanie Schielfelbush, a young American who appeared at my door with parish priest Giuseppe Mizzoti of the Visitacion Church in 1987 with a project to provide free lunches for the poor children and elderly through the sponsorship system of the Christian Foundation for Children and Aging People. In that moment, when destiny was on my side, I wrote more than 100 introduction letters for children who were looking for sponsors in the United States. As a result of this providential visit, not only daily food has been provided to poor children of the Visitacion Church, but I was given the chance to meet Dr. Liliana Mayo, Executive Director of the Ann Sullivan Center; and in a short time, she gave me a job that changed my whole life, a job translating articles used for training parents and professionals who work with people with different abilities. I was also put in charge of statistical data of the Schools of Families and the Notes of Parents.

A mix of the old and new building of CASP (in 2002)
A mix of the old and new building of CASP (in 2002)

The Centro Ann Sullivan de Perú-CASP, the flagship of special education in Peru, as everyone knows, is an international center of training, education and research that educates people with different abilities, their families, and professionals working with them. This great institution that gives prestige to our country, and which I am greatly proud to be part of, has helped me through the years to get donated equipment that made my life a little easier as my neuromuscular condition progressed. They also kept the accessibility of the bathroom I used in mind in the old building and in the new one. Most important, when my mother was operated on emergency because her broken hip, or when she died, or when I was on the brink of death or when I almost lost my right vision in 2012 because of retinal detachment or when no taxi driver wanted to help me get into and out of the car and could not go to work or return home, CASP was behind me. Today, when I cannot return home daily after work but still need this work to continue to support myself, CASP helps relieve this stress by allowing me to stay in an apartment at the center during the week, giving me the ability to face other necessities.

At breakfast time at the CASP apartment (2014)
At breakfast time at the CASP apartment (2014)

So if I have lived more than expected with this kind of progressive condition in a country where welfare laws only exist on paper, it has been because the Lord gave me a supportive family and a place where the impossible is made possible to work and fight for my life.

Thanks to my mother, my brothers, the Visitation church, Liliana and Judith, CASP, and all those angels who came to my aid from different parts of the world and during different phases of my SMA in order to make me feel like I wasn’t alone in this fight. Thank you, my God, because without you nothing would have been possible.

Sincerely

Julio Chojeda Torres

With Denisse Ramos, coworker at the administration office (in 2014)
With Denisse Ramos, coworker at the administration office (in 2014)
In front of the apartment (December 2013)
In front of the apartment (December 2013)

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