The SCN8A community is one that unfortunately suffers devastating losses on a regular basis. In part two of this two-part series, TCSF volunteer Karen Varner shares her experience attending the Festival of Mark Making event that was held on what would have been Layla’s second birthday. View part one here. Layla: The Festival of Mark Making, Mark IIBy Karen Varner, Lily’s Mom and Volunteer, The Cute Syndrome Foundation In September 2024, The Cute Syndrome Foundation collaborated with SCN8A Australia for a special event—Layla: The Festival of Mark Making. It was created to honor the memory of Layla Al-Badri Loucopoulos on what would have been her 2nd birthday. Mark-making is defined as having an important effect on something. Having lived only a short time, Layla still left her mark on all who cared for and loved her, and now this event is her legacy. This year, the event expanded in scope to include works celebrating Layla and submissions representing the entire SCN8A community. Many of those affected by SCN8A are nonverbal so they are unable to share their thoughts, their dreams, or their desires. This event, however, gave all of them a voice through art. There were over 80 participants from all over the world. Some were battling SCN8A, others were siblings or parents, and sadly some had lost their battle with SCN8A. To say I was blown away by their amazing artwork is an understatement. These artists truly made their voices heard and the sound was deafening! Some people see individuals with special needs as unable to contribute to society, but they are so wrong. My daughter is nonverbal, confined to a wheelchair, and unable to grasp a paintbrush, marker, or crayon due to spasticity, but she was able to create artwork with her eyes using an eye gaze device. She has left her mark on so many lives over the years. I was honored to attend the opening celebration in person and share the mission of The Cute Syndrome Foundation with the Australian SCN8A community and their numerous supporters. The event began with a beautiful “Welcome to Country” by Craig Madden of the Eora Nation, followed by my favorite speakers, Ashleigh Kelly and her mom Jo Anne Kelly. Ashleigh, like my daughter Lily, uses an eye gaze device as she is nonverbal, and she used this device to give a special welcome to everyone at the event. However, the highlight of this event was having the opportunity to meet up with four other SCN8A families! We may communicate frequently on social media, but there is nothing like meeting in person and giving physical hugs. It felt like a family reunion. It was truly an honor to be a part of this event, to work with Layla’s dad and founder of SCN8A Australia, Costa Loucopoulos, and to see his and Ghaith Al-Badri’s vision come to reality.
Karen Varner Volunteer, The Cute Syndrome Foundation The Cute Syndrome Foundation is honored to have been able to support the vision of Costa and Ghaith in remembering Layla and providing a meaningful vehicle through which individuals impacted by SCN8A are able to express their voices via various artistic media.
1 Comment
Costa Loucopoulos
2/1/2025 06:54:33 am
We love you Karen and are grateful and honoured that you stood by us from the first day you met us - well before this event. Thank you from our hearts.
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