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*UPDATE* Sadly, Lilly lost her battle Friday; March 13, 2015 in the comfort of her home. Please consider praying, donating any amount you can spare and sharing this page. Lilly's family will be forever grateful as there are over $40,000 in arrangement costs and outstanding medical bills.
Lilly is 5 years old. 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. 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.
Unless a cure or better treatments for Dravet syndrome and related epilepsies are found, individuals with these disorders face a diminished quality of life. Current treatment options are extremely limited and the prognosis for these children is poor.
In addition to Dravet Syndrome Lilly suffers from a bipolar
disorder, being nonverbal, hypotonia, global delay, obstipation, lack
of / poor coordination among a lengthy list of other conditions.
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