Story
My Name is Amanda, and I live with Dravet's Syndrome.
Dravet's Syndrome is a catastrophic neurological disorder, with seizures often prolonged, seen within the first year of life. The seizures associated with Dravet's Syndrome are incredibly difficult to control and resistant to medication, remaining challenging and persistent. Current treatment options are limited, and the constant care required for someone suffering from Dravet's Syndrome can severely impact the person and the family’s quality of life. Unfortunately, this is our life.
Written by my mom on how Dravet's Syndrome impacts my day-to-day living. My parents will continue to care for and support me throughout my life as Dravet’s syndrome brings many complex health challenges. This rare condition affects one in 19,000 people, and it has caused me to experience severe, prolonged, and unpredictable seizures. Over the years, I’ve tried almost all available medications—often in combination—to control my highly resistant epilepsy. I’ve been admitted to the hospital several times for extended seizure episodes, placed on life support, and treated in intensive care due to their severity. My parents have Emergency Rescue Medication they have to always carry with them, we have a portable suction machine, and Oxygen at home to try to control this life-threatening and often life-limiting event for children /Adults with Dravet's. I usually have background seizure activity going on most days that affects the activity I am taking part in.
Part of my Dravet's Syndrome is that I need constant 1-1 support in all areas of my daily learning, medical care, and physical needs. I find it difficult to concentrate due to the amount of daily medication that I MUST take and their side effects. Over the years, I have developed progressive curvature of the spine, resulting in poor posture and mobility, relying on my wheelchair outdoors more as I become tired, often leading to seizures.
Dravets Syndrome is part of my life, but not who I am. I enjoy lots of fun activities, including watching my DVDs, playing on my iPad, ... teasing our dog. (Happy Harry the Hound). I have a very quirky sense of humour that keeps my mum and dad on their toes lol. My favourite things in the whole wide world are being an Auntie, spending time playing, painting, baking, singing, and dancing with my wee niece (BEST FRIEND), who I just love.
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Let's raise awareness together a raise the much-needed funds towards research into finding a CURE for children who may be born with Dravet's Syndrome.