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For those of you who are less familiar with Alex, he was born with SWS in 2007. He has suffered from hundreds of stroke-like seizures, about 25 laser treatments for his skin port-wine stains, and has been hospitalized twice with intractable seizure clusters. He has cycled through six anticonvulsants and has finally improved recently while under the care of his team of neurologist, pediatrician, ophthalmologist, teachers and therapists. As a lovable and caring seven year-old, Alex is the epitome of hope and a gift to his parents.
After nearly 15 years of study, one of Alex's neurologists, Dr. Anne Comi, and Dr. Jonathan Pevsner, associate professor at Johns Hopkins Hospital School of Medicine & Kennedy Krieger, identified the cause of Sturge-Weber Syndrome (SWS) and published their findings last year in the May 2013 New England Journal of Medicine. With this finding, there is renewed hope for Alex and others who live with SWS. We believe that their research will lead to improved treatments, a better quality of life, and ultimately a cure. Like many families with SWS kids, we are urgently trying to help The Hunter-Nelson Sturge-Weber Center at Kennedy Krieger Institute raise funds to proceed with the necessary clinical trials.
To donate now, please click on the DONATE NOW button to the right and make an online donation to support Sturge-Weber Syndrome research.
Thanks from Alex, Ee Ching, Zia, and Zoe.
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