"The Lord himself goes before you and will be with you; he will never leave you nor forsake you.
   Do not be afraid; do not be discouraged.”
Deuteronomy 31:8

Tuesday, June 16, 2015

Wear Purple on Tuesday June 23rd!!

Just a reminder to wear your purple next week on Tuesday, June 23rd for Dravet Syndrome Awareness Day!! Show your support for Luella and so many others battling Dravet Syndrome! Send me pictures (email or facebook) of you in purple to add to our Purple Video at the end of the year!!

If anyone asks you what Dravet syndrome is - the short answer is: it's a severe form of epilepsy. If they want more details here are some:
  • Seizures begin in the first year of life in an otherwise typically developing infant.
  • There is currently no cure.
  • Initial seizures are most often prolonged events (status epilepticus).
  • Individuals with Dravet syndrome face a higher incidence of SUDEP (sudden unexplained death in epilepsy).
  • Children with Dravet syndrome do not outgrow this condition.
  • Treatment options are extremely limited.
  • Dravet syndrome patients require constant care to assure their safety due to the unpredictability of seizures as well as their inability to recognize real danger.
  • Individuals with Dravet syndrome have associated co-morbid conditions that can include: 
    • Behavior issues and developmental delays 
    • Deficits in social and learning skills 
    • Movement and balance issues 
    • Growth and nutrition issues 
    • Sleeping difficulties 
    • Chronic upper respiratory infections 
    • Sensory integration disorders 
    • Disruptions of the autonomic nervous system (which regulates things such as body temperature, sweating, and toileting)

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