Syndey

Sydney Michaels lives in Southwestern Pennsylvania. She had her first seizure just days before she turned three months old. That seizure lasted well over 20 minutes. Within weeks, her seizures rapidly increased in number, frequency, and length. Multiple drugs & combinations of drugs were attempted and failed. New seizure types continually emerged. No answers were given as to why the seizures were occurring, only that she would probably grow out of them. Everything seemed to trigger seizures in Sydney…light, water, sound, touch, excitement, movement, etc… Sydney eventually reached a point where she was having thousands of seizures daily with three to five general tonic-clonic seizures weekly, most of which required Emergency Room visits. The decision was finally made to try the Ketogenic diet with then 10 month old Sydney. There was vast improvement with the diet even though it didn’t completely remove all her seizures. Finally, at 11 months of age, the answer was found on a DNA test. Sydney was diagnosed with Dravet Syndrome (Severe Myoclonic Epilepsy of Infancy), which occurs when a mutation takes place on SCN1a gene. There is no cure, and she will never outgrow this catastrophic epileptic condition. Dravet Syndrome is epilepsy on a scale that people cannot even imagine!

Now, Sydney is four years old. Her seizures continue because Dravet Syndrome is typically not well controlled through medication. She is on three antiepileptic drugs daily, plus two other emergency antiepileptic drugs for longer seizures to be used as needed. She is on eight other daily supplements, most of which are required to keep her on her Ketogenic diet. Sydney also eye patches to help control her seizures. She is developmentally delayed to a level of 24-28 months. A good day for Sydney would be 30-50 seizures; on a bad day, her seizures can be well into the thousands! High CBD/low THC medical Marijuana is proving to be very effective in the lives of many Dravet children across our country and around the world. Sydney’s epileptologist at Chicago Children’s Hospital specializes in Dravet Syndrome, and she believes that Sydney would be an excellent candidate to try high CBD MMJ. Please help us improve the quality of Sydney’s life and get better seizure control by allowing us the opportunity to try this edible form of MMJ!

To learn more about Sydney, visit her website www.sydneyagainstdravet.org

Update March, 2014

Since the senate hearing for SB1182 Sydney has had 3000+ seizures every week. She has had two status epilepticus seizures - one of which was the scariest we have ever had because Sydney stopped breathing for about 3 minutes.  We have had to call 911 twice. We have been through multiple nights of seizures occurring all night long. Three times, my heart has stopped in the middle of the night because I would jerk awake thinking Sydney was dead beside me because she felt so cold and I couldn't feel her breathing at first. With seizures being so bad at night now, she has slept in our bed every night since the hearing, which means little restful sleep for any of us. We have had to administer 17 doses of emergency rescue drugs.

UPDATE October 20, 2014

"She lost her smile," Julie Michaels recounts the days after her daughter, Sydney, began having seizures. Sydney, now 5, has been on numerous medications all in an effort to curb the hundreds of seizures she experiences each day. Julie was instrumental in gathering fellow parents in PA to help lobby for what could possibly be the only medicine left for their very ill children. Please watch this short documentary, from the Herald Standard, chronicling the Michaels Family's journey to legalize Medical Cannabis in PA.