March 26th is purple day, an international initiative to raise awareness and funds to support people living with epilepsy.

This March, I am dying my hair purple to raise funds for epileptic encephalopathy research with the epilepsy research centre at the Melbourne Brain centre.

Epileptic encephalopathy is a severe, often drug resistant epilepsy characterised by frequent seizures that cause neurological deterioration. My daughter, Adeline has been affected by epileptic encephalopathy with spike wave activation in sleep for the past 3.5 years, developing severe seizure patterns after having meningitis. Adeline has had to go through brutal side effects from multiple medications, which have all failed to control her constant subclinical seizure patterns. This condition has left her with a major cognitive impairments, a severe memory impairment and a huge behavioural change. It's been heartbreaking to see epilepsy take so much from her.

Purple day is also significant to me due to my son, Emerson also having had epilepsy (currently classified as grown out of it) and my sister, Felicia, who has had epilepsy since age 16. I am so proud of my purple heroes and epilepsy warriors who continue to inspire me every day.

We hope that by supporting epileptic encephalopathy research, we can see more developments occuring and treatments available for this rare seizure disorder.

All funds will be directly sent to the following webpage, but you can also donate directly through here:

https://giving.unimelb.edu.au/epileptic-encephalopathies-research-1?startcustomization=1

Thank you for taking the time to read this and for contributing any amount, great or small :)

Much love, Jessamy, Adeline and family