For those of you who do not know Avery Akins, she is a beautiful, energetic, happy little girl whom suffers from Rett Syndrome. Rett Syndrome is an awful and rare neurological disorder that occurs almost only in girls. Avery is fully capable of understanding and recognizing you, she is simply stuck in a broken body. Shortly after her 2nd birthday, Rett Syndrome robbed her of the ability to talk, walk, use her hands, and she suffers from multiple seizures daily (despite several drugs).
On April 1st, Governor Bentley signed SB174, otherwise known as Carly's Law. This law will legalize the use of an oil derived from the non psychoactive ingredient in marijuana known as Cannabidiol (CBD) for the treatment of severe epilepsy. Since this oil is not FDA approved, her family will be paying out of pocket for her treatments until further notice. We have been told to expect the oil to range from $250 to $1000 a month.
This video (courtesy of
) gives a great explanation of Rett Syndrome.
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