Our cousin, Dimitri, who lives in the beautiful city of Athens Greece, was diagnosed with Asperger's Syndrome five years ago. Most children on the spectrum are diagnosed and treated by the age of three or four; however, due to the lack of research in his country Dimitri was not diagnosed until he was ten years old. For nearly a decade, Dimitri's parents desperately searched for answers from both psychiatrists and psychologists in hopes of understanding what was different about their son. As you can imagine, this took both an emotional and financial toll on their family - a toll that is still affecting them today.
The roller coaster got much bumpier in July of 2012 when Dimitri suffered his first of many seizures. They are more common in boys around puberty. He spent the night in the hospital, and he promptly recovered. However, on November 8th 2012, he suffered a very severe seizure which left him in the ICU on a ventilator and feeding tube for seven months. Dimitri was having a seizure once a day, making those months the longest of our lives. While in the ICU, he was diagnosed with Status Epilepticus, a life threatening condition where the brain is in a state of persistent seizure. We were told by the top neurologists at Boston's Children Hospital and John's Hopkins Children's Hospital that the condition is rare, however they treat two cases per year in the states. In Greece, Dimitri was the second case to ever be reported.
He was finally stabilized after six months of being hospitalized and was sent home in May. Since he was bedridden for all of his stay at the hospital, he became completely immobile and nonverbal, unable to leave his wheelchair or tell us how he was feeling. In need of constant support and aid, his mother quit her job to tend to him. Dimitri has gone to many physical and speech therapists; however, he has yet to improve or receive the serious treatment he needs in Greece.
Unfortunately, this March, he began to have an extremely bad reaction to the medications he was prescribed and is currently back in the hospital, and he is still immobile and nonverbal. On March, 15th, 2014, he was diagnosed with Paroxysmal Dystonia, an episodic movement disorder in which abnormal movements are present during attacks.
Our family is hurting, and the only solution that we believe will work is sending Dimitri for treatment in the United States. We have talked to doctors at John's Hopkins and Boston's Children Hospital who have outlined a plan to send Dimitri on the right track - a plan doctors in Greece are unable to provide. Of course, this treatment is very expensive. With so much bad news coming our way, I am grateful for such a supportive and loving family. My aunts, uncles, cousins, and friends have graciously been supporting Dimitri for the past two years. While their emotional support will never run dry, our financial resources are dwindling.
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