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Hi! My name is Tony and I was born in Puerto Rico with a condition called Spina Bifida; one of the most commonly occurring birth defects that affect over 166,000 individuals in the U.S. alone. It occurs when the spine of the baby fails to close during the first month of pregnancy, leaving a permanent opening in the spinal column. For those who are born with Spina Bifida, some face no challenges while others may live with conditions such as hydrocephalus (fluid on the brain) and varying degrees of paralysis.
I spent the first four years of my life in Puerto Rico. These were truly difficult moments for my family. Surgery after surgery with more and more issues, my doctors and parents discussed if PR was the best place for a child like me. Around the age of five, we were forced to leave my beautiful island and travel to the states in search of better medical care. It was during this transitional point in my life that my father and mother began to teach me about the power of words, whether they were in English or Spanish.
My parents would often say, “never say you can’t” when certain situations would frustrate me and I would be on the verge of giving up. Neither my brothers nor I were allowed to use that phrase around the house.
After realizing that the medical services in the island where not the best for me our family decided to move to the city of Boston Massachusetts where I spent most of my time in and out of hospitals due to issues related to my condition.
As an art teacher, my mother taught me various activities that forced me to use my imagination. I guess this was her strategy to help me take my mind off all the medical procedures I had to endure. While at hospitals my mother taught me to draw, to write and to create just about anything with the materials found in hospital rooms. I will never forget the fact that my mom always made time to teach me lessons about the importance of being honest, respecting others, and persevering in the midst of troubles.
Even when I had to deal with some many medical issues my mother would always stay positive in the midst of my ordeal.
Sometimes dad would stop by the hospital and talk sports, something that my bothers loved, but I never showed any interest. Nonetheless, I was strongly influence by my mother’s wild creativity and imagination. I must say that both my parents’ lives were centered in doing the best for us three boys. My parent’s faith in God was at the core of their relationship. It was that faith that sustained them through every difficult and trying problem that would come their way.
I am the eldest of the three boys, yet the smallest in physical size; the “little-big brother” is what my two younger siblings call me. Although born with Spina Bifida, the three of us had pretty normal relationships while growing up. Like any other family, we played, fought at times and shared tons of great experiences together. To this day, I value the fact that my brothers never took pity on me because of my condition. They treated me as they would anyone else. Because of that, I learned to be strong, and to fight back when facing challenges in my way.
However, there were many times where situations around the house were far from normal and I know that had to affect my siblings somehow. Younger siblings wouldn’t expect to see their big brother in a full body cast, hooked to central lines or IV’s, and with nurses constantly visiting the home. Although they might not say it, I know if I were on my siblings’ shoes, this whole situation would have affected me.
Although I realized the significance of all my struggles at an early stage in life, I wouldn’t act on it until my late thirties. After my years in Boston, my family moved to St. Petersburg, Florida where my dad ran his own janitorial maintenance business and my mother worked as a teacher. I was in a Florida hospital when I turned sixteen. It was also around that time when I created “Jimmy Wheelz”; a character based on my life experiences. Little did I know, the same skills my mother taught me during my extended stays at hospitals would play a crucial role in my future vocation.
Growing up I use to think that disability was negative aspect of life. However, the summer I created “Jimmy Wheelz” I realized that my personal experiences with Spina Bifida could indeed benefit others who are going through similar situations. At that moment I realized that I wasn’t alone. There were many others around the globe that needed to hear my message of hope and perseverance. Nevertheless, perhaps because of my low self-confidence and my fear of failing, I kept putting away the development of the character I had created in that Florida hospital.
It’s truly strange how the circumstance in this world can bring you back to the projects that you once left unfinished.
That’s what happened to me. After working for many years in different fields other than multimedia and graphic design, I decided to move back to Puerto Rico in 2009. It was in my homeland where interesting changes in my vocation began to take place. Who would have thought that the place that I left as a child would be the place where I would fine my life’s calling.
While in the beautiful island of Puerto Rico I began to learn more about my cultural traditions. There, I volunteered my time for the disabled community helping others wherever I could. While looking for employment, a non-profit theater and arts company called “Ecléctico Internacional Inc.” hired me as their graphic artist. Ecléctico is a pioneering organization that specializes in integrating individuals with disabilities in their theatrical productions. The venues are also accessible to all individuals particularly those with special needs.
While working for this group I felt all my knowledge and life experiences came together with the purpose of helping my homeland Puerto Rico become a more accessible place for people like myself. I’ve got to say that working for this organization was truly an honor and a life changing experience.
Sadly, while working in Puerto Rico I began to notice that my health began to deteriorate. This is when I realized why my parents were so concerned when I told them that I was moving back to the island.
Due to my condition and some recurring problems with my kidneys, I was forced to navigate through the Puerto Rican’s health system. It wasn’t what I expected at all! Due to the complexity of my condition, I was unable to receive the care that I needed from doctors. And after a year of trying to make it work, I made the decision to come back to the states and start all over again in Florida. Nevertheless, this time around I gained a new perspective about my purpose in life.
After arriving and immediately having a few surgeries, I quickly realized that I had to do something and stay productive. I decided to resumed the unfinished story of “Jimmy Wheelz”. So after all those years on standby, I began organizing my resources and in January of 2014 I finally launched, Jimmy Wheelz LLC. In addition, I began promoting the first “Jimmy Wheelz and the Minilights” children’s chapter book which is now available in Amazon.
It has been definitely a roller-coaster ride. Since then, I have done my best to learn as much as possible and always lend a hand whenever available. Today I’m working on Jimmy and the second issue at my home studio and at my own pace.
I know that my condition will always have its ups and downs. There will be plenty of falls along the way, but if I stay strong, have the right attitude and never say “I can’t” I know for a fact that I will keep surprising myself and reaching my goals year after year. I invite you, my friend to be part of this exciting journey by visiting my organization’s website: http://jimmywheelz.com/
Have a blessed 2015 ! Peace!