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This is Gianna, she is diagnosed with a rare metabolic disorder, CDG1k (Congenital Disorders of Glycosylation). Due to her disorder, Gianna has severe intractable epilepsy and was having over a thousand drop seizures a day. In August of 2014, she was sponsored by 420 Central Dispensary in Orange County, California. Gianna started with CBD oil and her cognition improved, but still was having between 60-150 drop seizures an HOUR. In December 2014, THC was added and Gianna's drop seizures decreased to 2-15 an hour. Currently she is on 3 cannabis oils and is dramatically progressing showing a 90% seizure decrease from the oil - going from 150 drops an hour to 10 a hour! Her cognition and awareness of her surroundings have improved and she is starting to be more vocal and forming words to talk. This brave little girl still lives with seizures daily which, until they are stopped, will always effect the level of progress she can make.
By the age of one, Levi was diagnosed with two forms of drug resistant, catastrophic seizures disorders - infantile spasms and Lennox Gastault Syndrome (LGS). He has been in and out of sub-clinical status epilepticus (you can't see the seizures, but they are going on in the brain non-stop) for most of his life. Every day this little warrior faces an uphill battle, but never gives up.
Both Levi and Gianna have had epilepsy (seizures) since birth. Their seizure disorders are quite different, but are both so severe they are life-threatening.
We will not give up the fight, be defeated or stop looking for ways to heal our children. Thank you for taking the time to visit our Seizures Suck website.
This website is a way to share our story and to raise awareness for this devastating neurological disorder.
To read more about their individual stories please go to LoveGianna.org and LeviLove.org.
And we know something about that.
Not all seizures are convulsive – there are many types of seizures that a child or adolescent might experience. Some signs can even appear to be normal behavior and may last a very short time.