How My Cousin With Rett Syndrome Found Her Voice and Made a Difference

2015-10-26-1445820235-374964-Valner133.jpgGaby Valner

A few years ago, my cousin, Gaby Valner, was diagnosed with Rett Syndrome, a neurological disorder caused by random mutations in a gene called MECP2. Diagnosed almost exclusively in girls, Rett Syndrome may cause loss of speech, trouble with balance and motor coordination, irritability and crying, and disrupted sleep patterns. Symptoms may also include seizures, anxiety, breathing problems, gastrointestinal and orthopedic issues, and oral motor difficulties.

Around the time of her diagnosis, Gaby graduated from the Emerson Academy, where she had immersed herself in literature, a passion that we share. Over the years, I've had the pleasure of reading her insightful analysis and learning from her unique perspective. Writing about Life of Pi by Yann Martel, Gaby observed: "Literature is quite powerful in that it helps us believe anything is possible. It expands and exercises our imaginations, making us see a tiger instead of an unmanageable situation, turning an abstract dilemma into a tangible problem to be more easily tackled." Yes, I thought. That's it exactly.

Naturally, when she was asked to give a speech at her graduation ceremony, Gaby turned to literature. Drawing from The Metamorphosis by Franz Kafka and Metamorphoses by Ovid, Gaby wrote about change. This is what she said:

In The Metamorphosis by Franz Kafka, a man named Gregor unexpectedly and unfortunately wakes up to find that he has been transformed into a life-sized cockroach. His family is none too pleased about this, and Gregor meets his untimely end after he gives up all hope of returning to a human life -- he wastes away after resigning himself to the life of a vermin. This might seem like a dismal literary reference, but the message is motivating. Sometimes, we all wake up feeling like a cockroach. It likely happens over time, the result of falling into routines that we don't even realize are harmful to our souls. One day we awaken and clearly see what we have become. This self-realization cannot be taken with any of the complacency that led to poor Gregor's demise. Transformation can happen both ways; with a little awareness of ourselves and our actions, we can morph back into the selves we are proud to be.

The classic epic poem Metamorphoses by Ovid tells the history of humanity, with the theme of transformation being the constant continuous thread tying all of the stories together. The first tale is about the formation of the universe: chaos was metamorphosized into order. The heavens, atmosphere, land and sea were all separated and put into their appropriate places. All of the parts were there but they were not able to perform their proper functions. This is my metamorphosis, and it is still happening right before your eyes. In my younger years I was filled with chaos, unable to access my language or knowledge. To transform my self-image, I had to learn -- and am still learning -- how to organize myself so I can sift through the chaos. This has been a slow process, and each day is a metamorphosis within itself; some days I wake up feeling like a cockroach scurrying around throughout the chaos, and sometimes I am the caterpillar serenely dormant in my cocoon, awaiting the moment of my emergence as a butterfly.

In moments of transition and uncertainty, I return to Gaby's words. They remind me to be brave and fill me with hope. Today, reading them once more, I linger on the last line. The words haven't changed, but Gaby has. Certainly, she's no cockroach (in my view, she never has been). But the caterpillar metaphor doesn't fit either, and that's because Gaby is anything but dormant.

Since delivering this speech, Gaby has shared her story time and time again. With courage and grace, she invites the world to follow her journey, offering a powerful voice for girls with Rett and opening the larger community's eyes to the realities and challenges of what it's like to feel trapped inside a body that doesn't respond to a remarkably intelligent mind.

She is a leader, championing the cause to find a cure for Rett.

She is a role model, inspiring girls everywhere with her wisdom and perseverance.

She is, to put it simply, a butterfly.

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Gaby will share her story at the Hope for Hannah & Gaby Gala in Los Angeles on Thursday, October 29. To purchase a ticket or make a donation to the Rett Syndrome Research Trust, please click here.