Dravet Syndrome Awareness
I would like to introduce you to my daughter, Hannah Sichelstiel. Hannah blessed our family on June 30, 2003. She was perfect in every way and had made our family complete. Our world came to a complete halt on September 5, 2003; Hannah had her first seizure. Throughout her early years of life, Hannah began a life of multiple seizures and multiple seizure types with no specific diagnosis, other than simple Epilepsy. At first her seizures came from a fever, but then she began having seizures for no apparent reason. A good day was maybe 5 seizures and bad day involved 30 plus seizures. Family gatherings and holidays were diminished due to the over stimulation, which always sent her into a vicious seizure circle. Our family began making alterations to just keep Hannah quiet to avoid any type of seizure triggers. During those first few years, Hannah had hundreds of transports to the ER, which sometimes involved a helicopter ride. After failing many medications and continued seizures, Hannah slowly started to regress and we decided to get further opinions. At the age of 4, Hannah began a new world of hospital admissions upon many testing procedures, introduction of new meds and the Ketogenic Diet at The Children’s Hospital of Philadelphia. After failure of meds and diet options, there was one more test remaining; a simple blood test that gave our family the most devasting news of all. On August 17, 2010, Hannah received the diagnosis of Dravet Syndrome (explanation below), a rare and catastrophic form of intractable Epilepsy. We knew there was no cure, surgery was not an option, Hannah would run a risk of SUDEP (sudden unexplained death in epilepsy), she would never be able to live independently and would always live a life that involved seizures. Hannah currently has the Vagus Nerve Stimulator (VNS) implant and takes 4 epileptic meds to give her somewhat seizure control. She continues to have awake generalized myoclonic seizures about every 3 weeks, and often has nights of a seizure every single hour within her sleep.
Hannah attends a public school within Carroll County where she receives special educational services, such as speech therapy, occupational therapy and adaptive physical educational services. To get her through her school day, she requires a 1:1 aide and three different learning devices. She does transition throughout her day in a general educational setting to give her the social skills from children of her own age. Due to her diagnosis, she may never learn to read, write and will never be on a cognitive level of children of her age, however, she loves school and wakes every school day with a smile and excitement.
After reading Hannah’s story, please know that Hannah is happy! Hannah loves life to the best of her ability and she always has a smile and hug to anyone that will welcome her into their world. Our family is so blessed to have such a strong little girl who has shown us what’s important in life, and has shown us to never give up no matter what life may give you. Thank you for supporting “Hannah’s Hope” campaign and for your purchase to help spread awareness of Dravet Syndrome. We must all come together to make a difference and give children, like Hannah, a better opportunity in life.
Dravet Syndrome is the mutation of the SCN1A gene. Along with seizures the following other underlining conditions exist: behavioral and development delays, movement and balance issues, orthopedic issues, speech issues, growth and nutrition issues, sleeping difficulties, chronic infections, sensory disorders, disruptions of the autonomic nervous system (regulates body temperature and sweating). This syndrome occurs about one in every 30,000 births. It is a progressive disorder that involves multiple seizure types that are resistant to treatment and run a high risk of SUDEP (sudden unexplained death in epilepsy).
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