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Welcome to Angelina’s website. Angelina is our beautiful and brave 4-year old who was born with a rare genetic mutation which is known as Severe Myoclonic Epilepsy of Infancy (SMEI) or Dravet syndrome. Dravet's syndrome is a catastrophic form of epilepsy that begins before the child is one year of age and is characterized by many different seizure types. This rare genetic syndrome is due to a gene mutation that interferes with protein development in the sodium channels in the brain. The faulty sodium channel causes many seizures. The seizures are very hard to control with standard anti-epileptic drugs. Afflicted children suffer a devastated quality of life from seizures, developmental regression, sleep disturbances, orthopedic problems and other issues. There are only 615 confirmed diagnosis in the world. There is no known cure and Angelina will never outgrow it. Progressive regression of acquired skills and developmental delays are sadly observed with an increase in seizure activity. We are praying that we can optimize Angelina’s development and give her the best quality of life possible.
Throughout everything, I am lifted up by love and prayers and I am always sustained by Hope. |
