Charming and brave, resilient and endearing, Dominic is a Dravet syndrome warrior notorious in his community for his infectious smile! His face exudes joy and will warm your heart, even on the dullest of days when Dravet syndrome rears its ugly head. Dominic is fearless with heroic courage well beyond his seven years. Despite daily challenges due to the complexities of Dravet syndrome, Dominic has, and will continue to prevail!
Dominic’s first seizure occurred at four months of age and lasted over 15 minutes. In the following weeks his seizures continued. Multiple tests were performed, including genetic testing, which revealed a mutation of the SCN1A gene that is linked to the diagnosis of Dravet syndrome, a rare and severe form of epilepsy. Those with Dravet syndrome experience developmental delays, moderate to severe cognitive impairment, and intractable epilepsy into adulthood is common. Without a cure, many children battling Dravet syndrome will die before adolescence.
The Dravet Syndrome Foundation (DSF) exists to support patients like Dominic, and their families, by aggressively raising awareness and funds for Dravet syndrome and related epilepsies. Dominic’s parents, Adam and Sarah, and older brother and protector, Graham, could not be more grateful to DSF! They feel blessed to be under the care of renowned physicians at CHOP, and to be comforted by family, friends, teachers, and neighbors in Pitman, a small but mighty community. It takes a village and Dominic’s family certainly appreciates those who continue to embrace them with compassion, loyalty, and sponsorship.
Although it can feel impossible to prosper living on the Dravet rollercoaster of fleeting highs and dreadful lows, Dominic and his family choose to embrace status quo, refusing to surrender to fear and despair. They feel grateful for the assignment God feels is just right for them and often refer to a quote by Henry Blackaby for solace. "I will not use human standards to measure the significance or value of His assignment. I will accept the reality that the Lord never calls the qualified; He qualifies the called."
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