Help Mira Find Her Voice Again

My name is Cameron Macfarlane, and I’m reaching out as a father in desperate need of help for my 7-year-old daughter, Mira. Mira was born with a genetic mutation known as SCN1A, which has led to a diagnosis of Dravet Syndrome. Since she was just one year old, Mira has endured seizures—sometimes triggered by something as simple as a cold, flu, or lack of sleep.

Despite these challenges, Mira had a bright and promising start. She began walking between the ages of one and two, spoke on time with an impressive vocabulary, and lived a mostly normal life, only slightly behind her peers. But everything changed when we discovered she was experiencing DEE-SWAS, a type of epileptic activity that occurs during sleep. This robbed her of restorative rest, leading to heartbreaking regression.

Over time, Mira lost her ability to speak. She could no longer grasp a crayon, hold a fork, or even chew her food properly. We watched helplessly as our joyful, talkative daughter slipped away into silence. The only treatment that has ever given us hope is prednisolone, a steroid that, for brief periods, brings Mira back to us. When she is on it, she thrives—running, playing, dominating the tire swing, and astonishing her teachers with her eloquent speech. But doctors only allow her to take this medication for up to six months at a time. Each time the prescription ends, the regression begins again.

Right now, we are back on steroids, hoping and praying that Mira’s words return. But we know that this is not a long-term solution. We need to explore every possible avenue—specialized therapies, alternative treatments, and expert consultations—to give Mira a chance at a stable and fulfilling life. With the groundbreaking achievements happening in gene therapy, we are hopeful a cure is right around the corner. Mira has been signed up for Stoke Therapeutics' Phase Three trial this summer, bringing us renewed optimism for her future.

As a father, watching my daughter suffer in silence is unbearable. I am reaching out to ask for support—whether through donations, sharing Mira’s story, or connecting us with resources that could make a difference. Every bit of help brings us one step closer to finding a solution that allows Mira to break free from this cycle and reclaim her voice.

Thank you for taking the time to read our story. We appreciate your kindness, generosity, and willingness to stand with us in this fight for Mira’s future.