Help Ebony Be Seizure Free

This fundraiser is organized by The Florey Institute of Neuroscience and Mental Health.

Help 4 ½ -year-old Ebony live a full, happy life free of debilitating seizures

Ebony is a young girl who started pre-kindy in February this year and enjoys bubbles, music, water play and spending time with her family. She also loves to walk with her hot pink walking frame, say ‘hello’ to people she meets and communicate in her own way with the small number of words that she can speak. Ebony has a severe form of epilepsy and developmental delay caused by a very rare genetic mutation that occurred in her HCN1 gene. She had her first seizure when she was three months old and at its worst, Ebony experienced up to 20 seizures a day. Sadly, there are currently no treatments available to fully control Ebony’s epilepsy or improve her development.

Desperate to find answers and new treatment options, Ebony’s parents, Tim and Alli, reached out to Professor Chris Reid, an Epilepsy Researcher at the Florey Institute of Neuroscience and Mental Health in Melbourne. Thanks to previous fundraising by Tim and Alli, Professor Reid’s team has been able to discover how Ebony’s mutation causes her epilepsy. However much more still needs to be done. With further research, there is hope of finding medications that could be tailored more precisely to better control her epilepsy and limit the side effects she experiences.

With your help, Ebony’s parents can continue to work with Professor Chris Reid and fellow researcher Lauren Bleakley at the Florey Institute to develop a targeted treatment for HCN1 epilepsy to give Ebony and other children like her who live with HCN1 epilepsy the best chance of living full and healthy lives. Your generosity will provide hope to Ebony and her family for a future that is no longer limited by epileptic seizures and learning difficulties.