We are "The Story of Our Life". Our mission is to help spread awareness and raise money to beneift people with epilepsy. This is our daughter, Story. She is a happy, free-spirited, and wild 4 year old. Just the way she should be. Except that in March of 2015 (when she was 21 months old), she was diagnosed with epilepsy. After a 3 day stay at UMC Hospital in Las Vegas, she was diagnosed with Generalized Epilepsy. At that time, she was having myoclonic jerks, absence seizures, and atonic (drop) seizures. Once she started on medication, she responded well, and was seizure free for 14 months and had normal EEG results. We were beyond happy and started discussions of weaning her off the med if she went 2 full years with no seizure acitivty.
Which brings us to last summer, June 2016. Story had her first tonic clonic (formerly known as grand mal) seizures. These were completely new to her, and to us. She was hospitalized again at Summerlin Medical Center. More tests were run and she was started on an additional medication. At that time, she went 7 months seizure free. Again, we were extremely happy with the results and remained hopeful, but unfortunately, with this disease, you are always waiting for the "other shoe to drop".
And unfortunately, it did.=( In February of this year (2017), Story had another tonic clonic seizure. That one seizure was just the beginning of what was to come. Since April of this year, Story has not been seizure free for more than a few days, if any at all. She has had numerous tonic clonic seizures, as well as a new type of atonic-myoclonic-absence seizure (AMA), which at this time, happens daily. She is currently on 3 AED's and is adding a 4th in the next few days. We recently did a genetic epilepsy panel with the hopes of obtaining more information. With the results of that test came an answer, but not great news as far as a prognosis goes. Story has a genetic mutation called CHD2. It is a rare form epileptic encephalopothy that onsets in childhood between 6 months old and 4 years old and can be severe. We are still very new to this diagnosis, but with it comes, refractory (hard to treat/med resistant) epilepsy, intellectual disabilities, developmental delays, and the possibility for Austism Spectrum Disorder, among other things. As I said, this is all very new to us and we are still waiting to discuss it further with her neurologist at her next appointment.
Although all of this has been going on in the last few months, Story has still remained the fun-loving, happy, and amazing little girl that she is. She is so resiliant, and we see that more and more everyday. She definitely keeps us on our toes, no doubt!! This, is what gives us hope.
We participate in events like Lemonade For Livy to help Story, and the millions of others with epilepsy. We hope for more research, more treatment options, and more success. Please consider donating to this amazing foundation and this amazing cause that helps so many find new hope.
From all of us in the Miller house and our wonderful team, "The Story of Our Life", we thank you sincerely for all your continued support and love over the last few years. Again, we are beginning another chapter of this "story", but we couldn't do it without the support of all of our friends and family!