On August 24, 2007, Spenser and I welcomed a beautiful baby girl into this world, Zoey Jane Johnson, who had no obvious health concerns.
Zoey was a very good baby, ate well, sleep through the night after 2 weeks, and extremely happy, a perfect addition to our family. At age 3 months, on November 29, 2007, Zoey received her regular vaccines like all new babies. Anxiously watching out for what we thought would be the worst of the side effects, a fever, Zoey slept close to Spenser and me that night.
That night all our lives changed. At around 1 A.M. Spenser and I woke up to a faint scream coming from Zoey’s bassinet. We turned on the lights to check on her and she seemed perfectly fine, so we laid her on the bed to change her diaper before going back to sleep. Just then, Zoey’s head and eyes locked to the left and she had her first grand mal seizure! Spenser watched her as I ran to the phone to call 911. Before I got off the phone it seemed the paramedics and police were at our house for the first of many emergency room visits. We immediately were in search of a pediatric neurologist the very next day.
We began seeing a neurologist, who we soon found out was not the right fit for Zoey’s condition and ultimately made the decision to travel out of state. We met an amazing doctor, Dr. Saleem Malik, at Cook Children’s Hospital in Fort, Worth, TX.
Zoey’s seizures continued to worsen. She began having thousands of myoclonic jerks a day (approximately 100 every 15 minutes), as well as grand mal seizures sometimes multiple times a week. During some of those seizures Zoey actually stopped breathing. Several MRIs, EEGs, CAT scans and other tests were run in efforts to find any kind of solution. We tried numerous medications and combinations of medications, as well as the Ketogenic diet. Some of these showed promising results, but nevertheless the seizures continued as did the testing.
After three and a half years and dozens of tests, Zoey was diagnosed with Dravet Syndrome on June 23, 2011. Dravet Syndrome is a rare and catastrophic form of epilepsy, in which there is no cure. Constant changes in seizures types, as well as behavioral issues, developmental delays, respiratory concerns, and numerous other issues are to be expected. So far, approximately 600 cases in the world have been reported, Zoey being one.
Zoey is on a combination of ten medications, including anti-convulsion medications, vitamins to stop seizures, as well as help deficiencies she has, and medications for her respiratory condition. Two of which are not FDA approved in the United States yet, therefore forcing us to import them from Canada and France- Stiripentol and Clobazam, that only work together with the Depakote, as they call, “the magic three.” Since they are not yet approved in the United States, insurance will not cover the cost, and they are extremely expensive.
Zoey continues to undergo routine tests and hospital admissions due to the uncontrollable seizures and a respiratory condition, which causes her to have chronic pneumonia, on top of other infections. Zoey has several different types of seizures including, myoclonic jerks, grand mal, absence, complex partials, as well as eye flutters.
Despite all that Zoey goes through, she continues to be an amazingly happy and brave little girl who loves to sing, dance, read books, watch Elmo, and interact with EVERYONE! She pushes everyday to learn as much as she can with the help of music, speech, physical, and occupational therapies. There hasn’t been a single person that Zoey has ever come in contact with that she doesn’t love and encourage to play with her. She is the bravest, happiest, most loving person I have ever known in my life. We love her and just want to give her the best life she can have in spite of Dravet Syndrome.
Thank you so much for taking the time to get to know about Dravet Syndrome and our precious little girl, Zoey Jane Johnson!
Zoey has now been on cannabis oil for just under a year and making remarkable progress! We have been able to come off of two anticonvulsant medications! Still have a long ways to go but headed in the right direction!!!!
Mallory Jo (Piel) Johnson
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