Hi! We are the Sichelstiel Family, Lisa, Karl, Joe and Hannah and this story is about our loving daughter, Hannah, a/k/a Daddy’s pumpkin pie, Mommy’s doodlebug and Joe’s sweet pea. Hannah is 8 years old and was diagnosed with Dravet Syndrome, August 17, 2010 through The Children’s Hospital of Philadelphia (C.H.O.P.)
Hannah began her life with seizures at 5 months of age. Her first seizure occurred the day that she received her 6 month immunizations after she contracted a 103 fever. That seizure lasted for 35 minutes and was interrupted by paramedics administrating mass doses of Valium. We were told that seizure was febrile, meaning a seizure caused by a fever. Hannah began her life after that as any toddler would and was continuing, at that time, to thrive in development. Within two months after her first seizure, she had another seizure that was not caused by a fever and then led her to living the past 8 years with thousand of seizures. Currently, to give Hannah some seizure stability she takes 4 seizure meds twice daily and has the Vagus Nerve Stimulator implant. Hannah enjoys being read to, loves to paint and loves attending Hampstead Elementary School. She will be entering the special education program of 2nd grade at Hampstead during the 2011-2012 school year. Although she will be entering 2nd grade; she is developmentally functioning at 5 years of age. Hannah is such a pleasant little girl with such a huge heart and a hug to share, even on those days where she may experience 30+ seizures.
Dravet Syndrome is a rare catastrophic form of epilepsy and comes from a mutation of the SCN1A gene with the brain. There is no cure for Dravet Syndrome and children who suffer from Dravet will never outgrow their seizures and will never be able to live an independent life.
The Dravet Syndrome Foundation is a volunteer-based non-profit organization dedicated to aggressively raising research funds for Dravet Syndrome and related conditions while assisting afflicted individuals and families.
On Saturday, October 15, 2011 the Dravet Syndrome Foundation and our family will host the first annual DSF Steps Toward a Cure walk-a-thon at Manchester Valley High School in Manchester, Maryland.
Your support is crucial to the success of our event. We are currently seeing walkers and business sponsorships. Please consider making a contribution to our event. All donations are tax-deductible and your business name will be displayed for all attendees to see.
Lisa Sichelstiel and The Sichelstiel Family