Please take the time to watch this beautiful video in tribute to all the children that have gained their angel wings too early because of Dravet Syndrome. Evie has a rare chromosome disorder that includes the scn1a gene which is in the sodium channel and is associated with Dravet Syndrome. Dravet Syndrome is a rare and catastrophic form of epilepsy for which there is currently no cure. Seizures begin in the first year of life in an otherwise typically developing infant. Initially seizures are most often prolonged events and by the second year of life other seizure types emerge. All seizure types are remarkably resistant to medication and the prognosis for suffers of Dravet Syndrome is poor. Individuals with Dravet Syndrome have many associated conditions, which also need to be properly managed. These conditions include; *Autism *ADHD *Developmental delay *Behavioural Issues *Growth and Nutrition Issues *Sleeping difficulties *Chronic upper respiratory infections *Sensory integration disorders *Disruptions of the autonomic nervous system *Mobility Issues Children with Dravet Syndrome do not outgrow this condition and it affects every aspect of their daily lives. They also face a higher incidence of SUDEP. This sadly happened to all the beautiful children in this video. Rest In Peace and Fly High Angels, gone but never forgotten.. Always thinking if ollie and his mummy Sarah my heart is always with you!! xxxxxx
Posted on: Wed, 26 Mar 2014 18:23:45 +0000
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