By definition: Dystonia is a neurological movement disorder characterized by involuntary muscle contractions, which force certain parts of the body into abnormal, often painful, movements or postures. Dystonia can affect any part of the body including the arms and legs, trunk, neck, eyelids, face, or vocal cords.
At three months we noticed that Breanna was unable to do some of the basic things that most children her age were doing, such as grabbing objects. After consulting with her doctor, he assured us, stating that all children develop differently and to give it some time. As Breanna got older we noticed that she was still behind in a lot of things. Again, her doctor suggested we wait it out, saying that “perhaps she’s just a slow developer.” As time went on, we realized that something was, indeed, wrong and we began consulting specialist after specialist. Finally, a doctor from Children’s Hospital determined that Breanna has a disorder called Dystonia.
Dystonia is a relatively newly-discovered disorder, but evidence suggests it has been around for a long time and many people have it - perhaps as many as one million people in the United States alone. Today, most people have never heard of Dystonia, and, shockingly, many doctors are unfamiliar with Dystonia as well. This has proven to be a monumental hurdle as we face the continued battle to free our precious angel of this rare affliction.
Breanna is now five-years-old, and while other children her age are running and playing, she still cannot crawl, walk, roll over or play with toys. Her ability to grasp even the simplest of objects is challenging – plus her speech is affected, sometimes making it difficult to understand her. But Breanna is beautiful, bright and a pure joy. She lights up a room with her smile and infectious giggle; everyone who comes in contact with her loves her. Breanna is now a “big” kindergartner and loving school.
We have great hope for Breanna, and for others like her. Please keep Breanna in your thoughts and prayers as we continue this uphill battle to find a cure.
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