I used to think that “port-wine” was just a type of drink, until the day my son was born and everything changed. Imagine welcoming your newborn with dreams of the future, only to have those dreams blurred by the words “Sturge-Weber syndrome.” From the joy of a new family member to the heartache of a diagnosis—our journey with Sturge-Weber is a testament to resilience and love.
My husband and I are college sweethearts. We met in our Senior year of college and now live in Texas. We have a 4-year-old daughter and a 1-year-old son, Cole, who has been diagnosed with Sturge-Weber syndrome (SWS).
I had an easy pregnancy with our son; he was born at 39 weeks in September 2023. After an easy birth, we quickly noticed what we thought was bruising on his face was a port-wine stain. The doctor came into the room a few hours after he was born and informed us of the risk of Sturge-Weber. We were quickly released to go home after 24 hours and scheduled our first pediatrician appointment. After going home, we searched Google for SWS and we were struck with fear of our uncertain future with our son.
Our pediatrician advised us to see a pediatric neurologist, ophthalmologist, and dermatologist to be proactive. Thankfully, we secured appointments with these specialists within weeks.
During each appointment, there was a flood of information that felt like we were drinking from a firehose. When life hands you a firehose, you learn to drink water in ways you never imagined possible! Balancing a newborn, a toddler, and sleepless nights while trying to understand our son’s condition was incredibly challenging. Fortunately, each specialist was experienced with SWS and reassured us.
In November, our neurologist scheduled an MRI to check for vascular malformations in our son's brain. On December 19, 2023, after completing the MRI, we received the call confirming our son had SWS with a presence on the right hemisphere of his brain. We were devastated. Over the holidays, we processed the news with our family, then we reached out to The Sturge-Weber Foundation. Connecting with Julia from the Foundation was a turning point—she shared her family's SWS journey and offered invaluable guidance, transforming our fear into action. An angel in disguise is what she is!
Over that next month, we worked with our pediatrician and neurologist to ensure we had the appropriate emergency meds in case our son was to have his first seizure. An ordinary day in mid-January was that dreaded day. It was a moment of terror, but also a testament to our newfound strength. Thankfully we were well-equipped with what to look for based on conversations and tools provided by the Foundation and our care team. We were in the hospital for four days and Cole was put on daily seizure meds.
After being released, we were quickly readmitted due to some additional seizure activity. Since then, we have had a few trips to the ER but overall, our son is thriving. He has done three pulse dye laser procedures and is being closely followed by his neurologist and ophthalmologist. Our family vacations to Seaside and Nashville aren’t just trips—they are escapes from a reality that sometimes feels too heavy to carry. Our son loves going to the park with his sister, playing on the swing, and splashing around in the pool. Our day-to-day life might look normal on the surface, but we’ve become experts in the art of vigilance and seizure care.
From college sweethearts to worried parents, our love story now includes battles we never anticipated but are determined to win. It’s also a story of hope.
There is Strength in Shared Struggles
When we think of our global warriors, we don’t just see a community – we see family. A bold, unstoppable family united by the fight against a rare disease.
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