• 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 incredible 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 for us, this is our life.

Mum and dad will continue to look after and support me throughout my life, due to the many different health issues that Dravet's Syndrome is associated with. Dravet's Syndrome is incredibly rare with a 1 in 19,000 chance being born with the syndrome that has caused me to suffer from sever, prolonged unpredictable, multiple seizures. Over the years, I have had almost all known medication in a variety of cocktails to try reduce my extremely resistant Epilepsy. I have had many emergency hospital admissions for prolonged seizures, on Life Support with visits to Intensive Care due to the severity of this episodes. 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 control theys life threatening and often life limiting event for children /Adults with Dravet's. I often have background seizure activity going on most days that affects activity that I am taken part in. 

Part of my Dravet's Syndrome is that I have Autism and need constant 1-1 support in all areas of my daily learning, medical and physical life. I find it difficult to concentrate due to the amount of daily medication that I MUST take and their side effects. In the last few years, I have developed curvature of the spine, resulting in poor posture and walking, needing my wheelchair when outdoors more than before as I become tried and often leads to a seizure. 

Dravets Syndrome is NOT WHO I AM. I enjoy lots of fun activities, including, watching my DVDs on my iPad, ... teasing our dog. (Happy Harry the Hound). I also have a very quirky sense of humour that keeps my mum and dad on their toes lol. My most 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. 

Let us raise awareness together for the much-needed funds towards research into finding a CURE for children who may be born with Dravet's