Elizabeth is a spirited 4 year old who can only communicate with her
expressive eyes, face and gestures.
She was diagnosed with intractable epeilepsy since the age of 5.5 months in the form complex partial seizures with rapid secondary generalization coming from the left side of her brain .
Elizabeth is controlled on medication most of the time, but has failed many medications. When she has a seizures they multiply quickly, then become sub-clinical and put her into Non Convulsive Status.
At 18 months old she was also diagnosed with numerous sleep disorders. Since lack of sleep is her only known seizure trigger, she began to take medication to regulate her sleep.
Elizabeth then enjoyed 15 months of seizure freedom and even spent 4.5 months off medication. But then in August 2012, the seizures returned and she had to spend 14 days intubated in a medically induced coma in order to make them stop, along with a month long hospital stay.
In September 2013, Elizabeth had a brain surgery where 126 electrodes were placed on the surface of her brain in an effort to pinpoint seizure generating areas and plan their curative removal. This led to Elizabeth contracting and battling MRSA. The surgery data revealed 4 seizure generating areas, but only 2 could be removed, yielding a chance at a surgical outcome with 60% seizure reduction. Since the surgery would not be curative, her parents immediately made plans to move to Colorado from New York to start Elizabeth on Charlotte’s Web oil (created by the Realm of Caring)with the support of family, friends and medical team. It is her family’s hope that this high CBD, low THC edible medical marijuana oil will help keep Elizabeth’s epilepsy under control.
Despite her challenges, Elizabeth is a happy, fun loving, and thrill seeking little girl. Her dreams are to be able to talk, interact with others and be seizure free. Her bravery is an inspiration for all. Elizabeth is a hero to her family. She enjoys school, music, instruments, the outdoors, slides, eating her favorite foods, running, bouncing, and her little brother John. Elizabeth is an angel sent from heaven.
NOTE: New York’s Gov. Andrew M. Cuomo plans this week to announce an executive action that would allow limited use of medical marijuana. http://www.nytimes.com/2014/01/05/nyregion/new-york-state-is-set-to-loosen-marijuana-laws.html?hp&_r=0