Hi, my name is Danielle Preiser. I am 25-years-old and the sister to an extraordinary brother, Jonathan Preiser. Jonathan is 30-years-old and a complete miracle. Jonathan has Fragile X Syndrome, a genetic disorder that manifests similarly to Autism. Jonathan has far surpassed the doctor’s expectations and is an inspiration to all. He is my best friend and my world. 

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Here's Our Story: 

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When my brother, Jonathan, at age thirteen, came down from the stage after receiving his middle school diploma he ran right to me. Not to my mother or father, but to me. He threw every ounce of his being into me. At that age, he towered over me. Every bit of love and vulnerability was encapsulated in that one hug. It was so tight and so sincere that neither my family nor I will ever forget it. With this hug came the realization of an everlasting duality. I lived in two worlds: Jonathan’s mentality and commonplace normality.

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Jonathan’s world is a fairytale. It is Cinderella’s slipper, and Aladdin’s New World, in which everything is fantastical and anything is possible. His vision is like that of a tourist who visits New York City for the first time; everything glistens and catches his attention. He is encompassed and overjoyed by the lights that surround him. As we ride in a taxi, I stare out the window and pick out the corporate names: Citi Bank, Metlife, etc. I identify the superfluous: Gucci, Chanel, and Prada. Jonathan, contrarily, has the eyes of a child. He cannot read the names and instead marvels at the wondrous architecture around him; the buildings’ different colors, textures, and sizes. As the taxi storms through the bustling streets, and the buildings briskly escape our window’s views, I forget the previous ones, but Jonathan does not. He does not attune to the horns of the angry drivers and the screams of the careless people; he is so fixated on the desire to connect with each structure. He is so captivated that he will never forget each building’s individuality, each building’s story. Even if the surface is rough, even if the paint is decrepit and the stairs are rickety, each building is perfect in Jonathan’s eyes. This is the same practice Jonathan employs when meeting people. Jonathan is “eXtra” special.

 

Jonathan has Fragile X Syndrome, a mental impairment resulting from a broken X chromosome. There is no way around the harshness of this diagnosis–– it means brain damage. I witnessed the crudeness of such a diagnosis the first time Jonathan and I tried to read the “Dick and Jane” books together. Jonathan was eight. He stuttered as he tried to make out recognizable words like “yes”, “no”, and “dog.” He turned to me and his huge brown eyes conveyed everything. As Jonathan awkwardly laughed, I secretly cried. Jonathan then turned this bleak moment into an extraordinary one; he hugged me. Jonathan had never offered this tactile affection to anyone before. I quickly learned that the bond we shared was different from everyone else and is special.

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All humanity lives on the same earth as Jonathan but within other conventions, those of normality. Here, the world is a much darker place. Jonathan is Ariel from The Little Mermaid, trying to leave the sea and witness the land, but he has no idea of the dangers of the land. I distinctly remember one incident, where my father had handed Jonathan a twenty dollar bill to get a pack of gum from our local convenience store. In hopes of teaching Jonathan monetary value and responsibility, my father and I patiently waited in the car. Jonathan jollily skipped into the store with the widest smile on his face. Jonathan then came back to the car, chomping away on some bubblegum, with the pack in his right hand and a one-dollar bill in his left. My father asked Jonathan for the change. I saw my father's jaw lock and his eyes narrow. He looked back at me before he stormed into the store. As I sat in the backseat, disgusted, I watched Jonathan through the side-view mirror, he was smiling, checking himself out, proud of the transaction he had just completed. My father then returned with the seventeen dollars and twenty-three cents that the cashier “forgot” to give to my brother. Jonathan did not and will not ever know the malignancy behind that dollar bill. He will never inhabit this polluted world.

 

Because of Jonathan, I have come to re-envision my own world. My actuality is two-dimensional. Peering through Jonathan’s care-free, wide eyes and society’s tainted lenses, I see light and dark; heaven and hell. This perspective penetrates my actions. I believe that there is still good in this world, and that light can break through the darkness. With this core concept, I have created One Special World. This is not just an organization; it is a movement. Through volunteer service, fundraising, and peer education, my wish is to collaboratively eliminate the stereotypes and stigma associated with "special needs" and to create a world in which we are all recognized and celebrated. After all, all of us at OSW believe, “The Strongest Force is the Power of Togetherness.” Although an ideal world is not plausible, Jonathan’s nature has shown me that I can never lose hope. Each day as I walk down the city streets, I smile, knowing the smiles I receive in return prove Jonathan’s world is there, even beyond Jonathan’s binoculars.

 

My duality makes me the pilot of two lives. Jonathan’s credo, “Pilot your own life,” has been modified to suit our worlds. Being that Jonathan has inborn limitations, I do everything for the both of us. I study, skate, run, debate, and am motivated knowing that everything I do is for two. Our gratification is escalated and our celebrations are exaggerated because every time, we both succeed. This merriment will pass over to our adulthoods, when I will be the sole caretaker of Jonathan; eventually it will just be he and I. Yes, I am scared, but I know my hero and his vision will always be the impetuses behind my fire. With this backing, I will do all that I can to sparkle our futures.

 

Jonathan’s world is a utopia, a place where I go to escape the complicated world. It is a world that many people need religion in order to find, a world that some doubt. But I’m more than just a believer; I see this world with Jonathan. I can spot the spectacle of the buildings in the ghastliness of the dollar bill.

 

My duality surpasses normality. Jonathan and I have given each other love and created an eternal bond– the strongest force I have ever experienced. 

 

When I picture my brother back up on that stage receiving his diploma, I have dual emotions. In Jonathan’s eyes, this graduation means maturation and celebration. In my eyes, my older brother will grow in size, but he will always be the same innocent Jonathan. 

 

He will always run to me and I will spend my life running for him.

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My hope is that anyone who puts their heart and time into this organization will get it back hundred-fold. I would like to extend the biggest and most heartfelt thank you to each person who has listened to our story, helped spread our message, and made the choice to look past some of this world's bitterness and see through Jonathan's eyes, even for just a second. You make this world a better place. Together, we create One Special World. 

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Thank you,

Danielle

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