In Memory of Lilly Pihir

UPDATESadly, sweetLilly lost her battle with Dravet Syndrome onFriday; March 13, 2015 at home. Please consider praying, donating any amount you can spare and sharing this page. Lilly's family would like to donate the proceeds from this specific fundraiser to National Seizure Disorders Foundation. Over the past 5 years they have been there to guide us and provide resources to better her quality of life. As has CCHMC.

This is Lilly's story:Lilly had her first tonic clonic seizure in May of 2010, it lasted over 25 minutes. Since then, Lilly has battled tonic clonic seizures, absence seizures and simplex partial seizures. She has tried many medications and recently her seizures have gotten worse and her development has plummeted. Her daily struggles are walking, talking, and using fine motor skills, using gross motor skills, seizures, mental & emotional instability.She battles generalized intractable epilepsy with a new diagnosis of Dravet Syndrome. In addition to Dravet Syndrome Lilly suffered from a bipolar disorder, being nonverbal, hypotonia, global delay, obstipation, lack of / poor coordination among a lengthy list of other conditions. This is what we have learned about Dravet from her neurologist and the Dravet Foundation: Dravet syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a rare and catastrophic form of intractable epilepsy that begins in infancy. Initial seizures are most often prolonged events and in the second year of life other seizure types begin to emerge. Development remains on track initially, with plateaus and a progressive decline typically beginning in the second year of life. Individuals with Dravet syndrome face a higher incidence of SUDEP (sudden unexplained death in epilepsy) and have associated conditions, which also need to be properly treated and managed. These conditions include: behavioral and developmental delays movement and balance issues orthopedic conditions delayed language and speech issues growth and nutrition issues sleeping difficulties chronic infections sensory integration disorders disruptions of the autonomic nervous system (which regulates things such as body temperature and sweating) Children with Dravet syndrome do not outgrow this condition and it affects every aspect of their daily lives. Because there is no cure or treatment available toindividuals with these disorders they face a diminished quality of life. Current treatment options are extremely limited and the prognosis for these children is poor. Dravet Syndrome may have won this time but it will not win forever. We need to help fund research for this syndrome so we can save other people. No parent should ever have to bury their child and experience what we have.

With All My Love, Tiffany, Lilly's Mommy