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“At six months old, while observing me in bed, my parents noticed that my eyes were making very rapid horizontal movements, which intensified when receiving direct light. This caused them a lot of anxiety, because they did not know whether it was just Visual problemsome Brain involvementA Degenerative condition Or a Cognitive disorder“
Oriana Pernas’ mother and father took her to the pediatrician, who identified the symptoms and explained that what was happening could be due to a neurological condition related to movement, perception, or simply the optic nerve.
After examining her, the specialist calmed the uncertainty a little by confirming that Oriana was like that linked to its environment, Which responded and reacted to different stimuli and showed Force and feedback Typical for his age. With this hope, the pediatrician tried to reassure her parents and recommended several neurological studies to better understand what was happening.
“My father went to a famous neurologist, and so they started the six-month period Exhausting. For reasons that are difficult to understand, it has been subjected to repeated studies that have actually been conclusive. Since I was a child, they gave me general anesthesia so I could stay still, and they put electrodes all over my head to measure electrical signals. It was a phase A lot of waiting and worrying “For them and for me,” says Oriana. “Seeing your daughter inside a machine, sedated and in the uncertainty of not knowing what is happening to her or what kind of life she will be able to have, was amazing,” she adds. Extremely painful “For my parents.”
Until the long-awaited diagnosis finally arrived: Optic nerve hypoplasia. This is a congenital malformation in which the optic nerve is underdeveloped or thinner than normal due to incomplete development before birth. It can occur in one or both eyes and cause different degrees of vision impairment, from mild problems to complete blindness.
“Knowing the diagnosis brought peace and tranquility He hopes For family. This means many important things. In principle, since my cognitive functions were good, I could Think, learn, talk, play And other matters that accompany the normal development of the child. Then the condition It was not degenerativeSo I didn’t intend to stay blindOr the appearance of other symptoms or greater loss of visual acuity. At that time, it was a huge relief.”
In your case, I can barely see 30%. From what the average person sees.
Despite the diagnosis, Oriana had a childhood full of joy and fulfillment. His parents and brother have always shown him unconditional love beyond any difficulty. They showered her with hugs and loving words, paid attention to every little smile or accomplishment, and celebrated daily victories together. They played with her, read her stories, and accompanied her on her first explorations. In that family, love and union were stronger than any diagnosis, and so on Oriana grew up feeling protected, valued, and full of hope for the future.
“Every weekend we would have a barbecue at my grandmother’s house with my cousins and play all the games, like football, rugby, hide and seek, cards, lottery or whatever we thought of coming up with at the time.”
He remembers that in kindergarten they told his parents that he would need an integrative teacher, whose role would be to adapt the content so that he could consume it and learn just like his classmates. The teacher came in once a week, although Oriana barely gave her her work because she didn’t want to feel like she needed it, not to mention that she had to deal with the rest of the days herself.
“My parents always made me feel that way There was nothing wrong with me And he, like any other child, can do it Achieve equal or better results in school. They supported me with words of encouragement and taught me to believe in my abilities. Internally, I felt a challenge It made me want to prove my worth, which is why I do it so often He demanded a lotrefused to accept help or facilities that could have made my way easier. But I didn’t do it out of rejection or sadness, but because it was in my heart The strength that kept me steady and helped me overcome any difficulty“.
Oriana says that the schools that took her in, no matter how compassionate and loving all her teachers were, did not have the necessary training to fully integrate her, so she had to make extra efforts, educate them and even discuss if necessary.
“I had to remember all the time that I didn’t just see O Try not to be a nuisance. The most vivid image I remember is that in order to copy the board, I got up from my chair, walked over, remembered three words, and sat down again to write them. My books were very heavy, enlarged photocopies Larger notebooks with revised fonts. The boundaries of the maps were also revised in color and the photocopies were enlarged until they were inconvenient to manipulate.
“My academic performance The spotlight was always onThis was partly because I had a passion for learning and was interested in monitoring my older brother’s assignments. In addition, my parents were constantly motivating me, teaching me new things and encouraging me to continue growing. I was also willing to do my best to ensure that my disability would not be noticed or be a hindrance to those around me.
This led to her being a companion of Argentine science at the primary and secondary levels, and completing her studies in economics with a bachelor’s degree. One of the top three averages in the schoolGet scholarships and recommendations for different universities.
“On social issues, my colleagues They have always loved and respected me and I have never suffered from bullying at school. They helped me with the visual aspect, and I helped them with homework and exams. I Defend When I had an argument with a teacher he reduced my visual problem and helped them cope by telling them how to deal with me.
“I could not ride buses without assistance, and in general I had many restrictions: exercise was not allowed, reading or writing was a constant challenge, and everyday tasks such as getting to know people, applying makeup, or cleaning were required.” A lot of effort And the conditions specific. Driving or doing certain tasks was not possible. However, thanks Technological adaptations and special strategies“I have been able to live an almost completely independent life, which is a huge privilege with my diagnosis, given that many people with optic nerve hypoplasia do not reach this level of independence.”
On a work level, Oriana knew she had to find a place where she felt competent and she found it in digital marketing, an ally to work independently from home using her computer, as well as all the visuals she needed to be able to work comfortably.
During the pandemic, without the ability to work in person, remote work has rapidly accelerated. Many companies have stopped using the office and have discovered that it is much cheaper to employ employees in other countries, in addition to reducing the risks and responsibilities for the companies.
“A friend of mine who started her own web design agency invited me to collaborate with her and shared a job offer that had popped up in a WhatsApp group I was in. A company from Spain was looking for a junior marketing specialist. “I applied and passed many interviews and tests, and thus got my first job as a contractor with a foreign company.”
What did you feel at that moment?
For the first time, proof appeared before my eyes that what I was doing was real, it was in demand, people were willing to pay for it, and it was a growing market. I was proud of my belief in this profession, even though my family did not understand what I was doing and thought it was just a fad or even some kind of scam.
What is your project?
I currently have a digital strategy consulting firm for service companies and a content agency for personal service brands. I decided to start a business because it was my dream and destiny, so after gaining experience working in agencies and on different projects, I decided to start building the lifestyle I loved in this profession.
What will this important achievement bring about in your life?
I’m a very outcome-attached person, so I love achievements, but they are only enjoyed for a short time until the mind gives me another bigger challenge. What makes me my happiest and most important accomplishment is that I decided to build a lifestyle that allows me to serve the world with purpose, work on something exciting, travel, make great friends, and have time to be with family and rest.
A message to people with disabilities who may not dare to strive for greater independence and freedom…
We all have limitations, whether they are called a disability or not. Denying them doesn’t make you strong, and being their victim will never allow you to be happy, but acknowledging them, embracing them, and treating them with compassion will make them your best allies.To build success in all areas of life.