Layla: The Festival of Mark Making is an annual exhibition dedicated to empowering children and families affected by SCN8A (a genetic mutation that affects the nervous system).
This year’s festival – which is being directed by Costa Loucopoulos – will be held on September 18 – 19 at The Nest Creative Space in Sydney.
The event celebrates the courage and strength of individuals with SCN8A and sheds light on their inspiring stories and resilience, while acting as both a space to connect and support those impacted by SCN8A, as well as an invitation to inspire those who may not know of the resilient angels that live among them in these families.
The Festival of Mark Making enables the families of children with SCN8A worldwide to ‘make their mark’ and share their voice through art.
With the various sensory challenges children with SCN8A experience, the opportunity to engage in making art empowers them to communicate with the world around them.
This year’s festival has over eighty entries from families around the world. Some of the entrants have SCN8A and others are siblings, parents, or friends who have chosen to make their mark. Sadly there are also those who have passed away, and artworks have been entered in their honour and remembrance.
This is a powerful community event held in Australia but is a focal point for the world, with entrants from eight countries across five continents making a mark together.
Layla’s story:
The festival is inspired by the story of Layla Al-Badri Loucopoulos who was born via surrogacy in 2022 to Costa Loucopoulos and Dr Ghaith Al-Badri. Layla passed away on 4 June 2023 at just over nine months of age from complications with SCN8A. Her short life made a powerful mark both literally and metaphorically on all who met her. Layla’s diagnosis brought families, nurses and hospitals together across continents from Canada to Australia. Despite her limited ability to communicate, Layla was able to do so through rich play-based and art experiences that enabled her voice in new ways.
Therapeutic art programs, like Layla engaged in, enable the voiceless to speak. Whether it is a child’s hands, feet or toes, the making of artworks can empower and give agency to SCN8A heroes.
What is SCN8A?
SCN8A is a genetic mutation that affects the nervous system. It has a broad range of comorbidities. These can include epileptic episodes, developmental disorders, sleep disorders and severe gastrointestinal issues. SCN8A-related disorders are a spectrum, impacting on children’s brain and physical development with a wide variety of impacts on the body.
With understanding of the disorders emerging, the challenges families and their children face can be persistent, unpredictable and inconsistent as nurses, doctors and researchers continue to struggle in diagnosing, treating and supporting children and their families.
Layla: The Festival of Mark Making is being held in partnership with The Cute Syndrome Foundation, which raises awareness of SCN8A mutations, funds the dedicated and talented scientists researching SCN8A, and supports families around the world who are affected by SCN8A-related disorders. Learn more about The Cute Syndrome Foundation and SCN8A at thecutesyndrome.com.
Full event details:
- Layla: The Festival of Mark Making – Mark II
- Dates: 18-19 September 2024
- Place: The Nest Creative Space, Sydney, Australia
- More details: layla-voice.com
