Dravet Syndrome & SCN1A Mutation
Raising awareness for those with Dravet Syndrome and SCN1A mutation by telling Myla Rose's story.
Myla Rose was diagnosed with epilepsy, a neurological disorder that causes recurring, unprovoked seizures, when she was only three months old. Myla’s neurologist confirmed his suspicions of something more with genetic testing at four months old. At five months old, Myla Rose was diagnosed with Dravet Syndrome and the SCN1A mutation.
Myla and her family embrace the challenges of Dravet Syndrome and celebrate all milestones as they come. Battling this diagnosis limits her ability to participate in many everyday childhood joys that others her age are able to experience. Every aspect of Myla’s life is monitored for seizures or triggers. Dravet Syndrome adds limiting factors into someone’s life and for Myla, its expressive speech. For effective communication, both expressive and receptive communication must occur. Speaking doesn’t come easily to all. It requires many things to happen. For those who struggle to combine the words, the neuro-pathways lack working together to make a sound. Therefore, they may use their hands to sign their wants and needs or may have a device that allows them to express themselves without the frustration. Myla continues to work hard and every attempt to communicate verbally is a step in the right direction. Uttering a sound of a letter is still communicating. She also battles Apraxia, which is having difficulty in performing daily tasks even if the instructions are understood. Myla’s independence, resilience, strength and warrior-like attitude allows her to conquer each mountain she faces each day. Myla’s family says she was “placed here by God to educate, teach, and define the boundaries Dravet has put on other kiddos!” Myla’s mother works hard to educate and raise awareness for both Dravet Syndrome and seizure first aid. Her story is unique and rare, but she is a true inspiration! Myla’s mother says, “knowing we have prepared for the worst, allows us to enjoy all of the best moments she gives us.” She is smart, strong and she is CAPABLE.
Mama is a true advocate, always by her side and is a comfort to Myla during her worst moments along with all of her stuffed animals. Myla Rose’s pattern represents the bond that she and her mother have and is a replica of one of her favorite stuffies.
