Alex is a lovable seven year old boy with a rare and severe seizure disorder called Dravet (Dra-vay) Syndrome. The most common question I get when people hear that Alex suffers from seizures is if he will out grow them. The answer to that question is no. Dravet is a lifelong condition where seizures will always persist, despite treatment. I think another common misconception is that seizures can always be controlled with medication...that I what I thought before Alex came along. The truth is that not all seizures can be controlled with medication. Alex has been on three anti seizure medications at one time...yes three....anti seizure meds since he was 6 months old and he still sufferes with seizures. Currently, Alex is on 3 anti seizure medications and is still having seizures.
There are only about 500 confirmed cases of Dravet Syndrome worldwide. Dravet Syndrome is considered to be one of the catastrophic types of epilepsy. It took us three years to get a confirmed diagnosis although I suspected he had it when I first learned about Dravet when he was 8 months old. As I was reading about the syndrome I thought Alex could have been a poster child for this disorder, but our doctors assured us they he did not have this. I think the major reason why it took so long for Alex to get diagnosed is because Alex's SCN1A gene is not mutated, which only accounts for 30% of the cases. But, Dravet Syndrome is considered to be a clinical diagnosis, where Alex has the majority of the symptoms and thus does in fact have Dravet.
I read many books about seizures and living with epilepsy and I remember reading one book that said that you should not have the seizures run your life. But that is much easier said then done. When Alex is clustering (having a lot of seizures back to back), and is having a hard picking up his head or even staying awake..you can't just pack up the car and go out to eat. Alex also has some trigger factors that will bring a seizure on, such as going in a pool (unless it's heated..which is rare to find in NJ), so obviously joining the town pool or even visiting someone's house who has a pool is pure torture for Alex, who loves the water. Over tiredness is also a major trigger factor for Alex, so you have to work things around his schedule and sometimes you have to cut things short..like it or not. I also have to avoid certain places if they have certain lighting because that is another one of Alex's triggers.
Dravet Syndrome has also affected Alex's cognitive ability, physical ability, and overall life skill ability. Alex has feeding,swallowing, and sensory issues that limits his food. .When Alex tries to eat solid food..he chokes. Alex cannot feed himself and is not fully potty trained (despite agressivly trying for several years). Alex is non verbal. His play skills are only about a 10 month old level and his overall skill leval ranges from 12- 18 month old level. Alex also has low muscle tone which affects his fine motor skills and his endurance to sit up straight. Alex has a hard time doing shape sorters and puzzles and cannot even hold a crayon to color. Alex's cognitive impairment is so severe that he does not understand harmful situations like touching a hot pot or going into the street without looking. We cannot leave Alex alone (not even at night) because he can have a seizure at any moment.
Now that Alex has been diagnosed with Dravet syndrome we are hopeful that we can improve his long term outcome through appropriate and aggressive medication therapy rehabilitation therapies, and an enriched environment. We are committed on doing everything we can to help Alex fight this battle.
Despite all of Alex's hardships, he is such a happy and amazing boy. Alex has taught me so much about life and what is important. His smile gives me strength and he inspires me every day. I love him with all my heart and will never give up on his chance for a miracle.