Not only do I work with this organization, but I am also a mother to a 3-year-old daughter who was diagnosed with this genetic mutation and had her first seizure at only 2 months old. It took our family about 3 months of constant ER visits, admissions, and testing before we were able to identify the cause of her condition with genetic testing. 3 years later, I often find myself explaining her rare condition to healthcare providers or ER staff because they have either never heard of or never encountered a patient with the diagnosis. For this reason, I am always dedicated to raising awareness for the children and families that are currently battling uncontrolled epilepsy and have likely been misdiagnosed or do not have access to genetic testing to identify the condition in which they may be living with. Had I not fought for answers, my daughter likely would not have survived to her 3rd birthday as she was having 2-3 hour long seizures that lead to her intubation.
We need to educate our community of the importance of genetic testing and the rare diseases that are stealing the lives of our children. And, what better way than to get your local government to recognize Dravet Syndrome Awareness Day. I approached our mayor’s office, who issued a Proclamation, making June 23rd Dravet Syndrome Awareness Day in the City of Orlando, Florida.
Each Proclamation helps to raise more awareness around Dravet syndrome and the challenges our patients and families live with. You can see the Orlando, Florida Proclamation at this link. If you would like to approach your local government and have any questions please email me. I would be happy to share my experience and help you secure a Proclamation in your town.