This month I decided to give locally. One of my cousins posted a link on her Facebook page about contributing to the cause of a young girl in our community who has Dravet Syndrome. I had read about Haley and her family in the local paper a few times. She has been through a lot in her short life as is chronicled at Haley is my Hero.
Haley's mom used to teach the most excellent kick boxing cardio classes at our local gym. She had to give that up when she became pregnant with Haley's twin brothers. I did not realize what the family was going through until her mother contributed a series of articles about Haley's condition in the local paper.
Dravet Syndrome is a rare disorder which causes epileptic type seizures in young children. In Haley's case, it began when she was 5 months old. However she was not properly diagnosed with the disorder until she was 7 years old. The website has a wealth of information on her story. Her family, through the International Dravet syndrome and Epilepsy Action League (IDEA League) are doing everything they can to educate the public about this disorder as the drugs used to treat this rare condition are not readily available in the United States.
Please take a moment to visit the website and read Haley's story. Despite her condition, this little girl remains happy and loving and displays a positive attitude towards life. I think her whole family are amazing and I wish I could do more to support them in what has got to be an overwhelming and challenging time in their lives.
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