The story of Everlee Robles is one of strength, love, and the unbreakable bond that holds a family together in the face of uncertainty. From the moment she entered the world, her life was anything but ordinary. Born 8 weeks premature, Everlee spent the first weeks of her life in the NICU, fighting for her every breath.
Her parents, Teresa and Victor, overwhelmed and exhausted, watched their tiny baby hooked up to machines and monitors as doctors worked tirelessly to stabilize her. The days in the NICU were long, filled with uncertainty, constant testing and clinicians coming and going. After a few weeks, Everlee was finally stable enough to go home—only to return to the hospital just days later.
In the months that followed, Everlee began to show signs of something more than the typical struggles premature babies face. Her mom, a determined and fierce new advocate, noticed unusual clusters of seizure-type behavior and captured these events on video. She knew something wasn’t right. This type of determination and advocacy led to Everlee being transferred to a bigger hospital which offered more specialized care for her daughter.
“It’s incredibly scary seeing your baby like that, hooked up to all these wires and probes, doing test after test,” her mother recalls. But even in the darkest moments, they kept pushing forward, never losing hope. After 45 days of negative test results, doctors finally gave the go ahead to run a whole exome panel. The results finally revealed the condition affecting Everlee’s health: SCN2A-Related Epilepsy. This rare and often challenging-to-diagnose genetic disorder is known for causing severe and frequent seizures, along with a range of other conditions such as Autism, Global Developmental Delay, and Intellectual Disability.
The news was a shock, but it also brought some clarity to Everlee’s poor health. However, the challenges were far from over. In the months that followed, Everlee was in and out of the hospital as her parents, in close collaboration with her doctors, worked to find the right combination of medications to keep her stable. It was a difficult road, and the family felt the strain, both physically and emotionally. With COVID restrictions in place, Everlee’s siblings—who longed to be with their baby sister—couldn’t visit her in the hospital. It was a heart-wrenching time for them, but they knew it was all in the hopes of bringing Everlee home, where she belonged.
Despite everything, Everlee has grown into a spirited and incredibly determined 2-year-old. Her parents say she has brought an immeasurable amount of light and joy into their lives. “I am blessed to be her mom,” her mother shares. “She is our ray of sunshine, and we wouldn’t have her any other way.”
The journey has been anything but easy, but it has also been transformative. Everlee’s diagnosis has taught the Robles family that they are far stronger than they ever imagined. It has also connected them with an extended family within the FamilieSCN2A Foundation, a network of other families facing similar challenges. Through this community, they have found resources, support, and lifelong connections that have helped them navigate the complexities of an SCN2A-Related Disorder.
What started as a terrifying and uncertain journey has led to a place of profound gratitude and hope. “This diagnosis has opened our eyes to the strength we never knew we had,” they say. “Everlee shows us every day that there’s always more strength, more love, and more joy to be found.”
Everlee is a true testament to resilience, and her family is proof of the power of love, advocacy, and a never-give-up spirit. As they look toward the future, they are filled with hope and confidence that, together, they will face whatever comes their way.
