Lena’s story began long before we heard the words Sturge-Weber Syndrome.
My pregnancy with Lena was high risk, filled with extra scans, uncertainty, and the difficult decision to have an amniocentesis. Even before she entered the world, we knew our journey might look different from what we had imagined.
Lena arrived early and spent the first 127 days of her life in the NICU. Those months changed me forever. Instead of learning the usual rhythms of motherhood, I learned to read heart rate monitors, oxygen levels, and medication charts. The sounds of hospital machines became the background of our early days, while I waited and hoped for the moment we could finally bring our baby home.
Despite everything she had already overcome, another chapter of our journey began when Lena was 21 months old. That was when her first cluster of seizures appeared. It was terrifying and confusing, watching our little girl go through something we couldn’t control or fully understand at the time.
Soon after, we were introduced to the diagnosis of Sturge-Weber syndrome — a rare neurological condition that can bring seizures, neurological challenges, and many unknowns.
But Lena is so much more than her diagnosis.
She is determined, cheeky, and incredibly strong. Every milestone she reaches feels hard-earned and deeply celebrated. Whether it’s improving her balance in therapy or developing new fine motor skills, each step forward reminds us just how resilient she is.
Living with Sturge-Weber has reshaped our lives, but it has also shown us the power of resilience and advocacy.
As Lena’s mum, I’ve learned to ask questions, fight for answers, and make sure her voice is always heard.
Lena continues to show us that strength can come in the smallest bodies — and that courage can shine through even the hardest journeys.
Now it's your turn! Share your journey with us.
