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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.
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The SCN8A community is one that unfortunately suffers devastating losses on a regular basis. In part one of this two-part series, Costa and Ghaith share with us the story of their daughter, Layla. Layla’s StoryBy Costa Loucopoulos and Ghaith Al-Badri, Layla’s Dads, SCN8A Australia Note: The following story is a visceral and emotional depiction of medical trauma and child loss.  Layla, our daughter, is no longer with us because SCN8A took her life. We could never have imagined how horrible it must have been for her to endure the challenges of the disease, as well as the burden that the existing treatments carry with them. On her gravestone it reads, ‘Eternity in Love’ and we genuinely believe that we are already together…in time. Time is precious and even though we all know that, the death of a nine-month-old makes you understand it fully.
But. First, we had to deal with the trauma and understand how to even function. It was like a cruel set of dominoes falling one after the other, leaving us breathless at every drop. |
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