“All things excellent are as difficult as they are rare”
Calvin is the definition of strong, brave, determined & RARE.
12.16.20 we met our new little love, Calvin.
We waited to find out his gender until the day he arrived. In addition to finding out we were blessed with a beautiful little boy we learned that his birthmark put him at risk for a very rare syndrome, Sturge Weber Syndrome.
Doctors came to share an overview of the syndrome - risk of seizures, glaucoma, details on his port wine stain. We were told UPMC Children’s Vascular Center would be in touch & shortly after we got home, we received the call. A series of appointments were scheduled & doctors assigned. We read about the syndrome, we went to all our appointments, & we had ~6 wonderful months of soaking in Calvin as the baby that he was.
In hindsight we know it is hard to understand what Sturge Weber Syndrome is, especially Calvin’s case & how it effects our family. We spent countless hours researching, but we were still so unprepared. We know now that even today we are unprepared for what the future holds as it is totally unpredictable.
We hope & pray that Calvin is blessed with a happy, full, long life. We are starting this blog to provide a window into his medical journey for our family & friends.
We ask that you never stop praying for us & if the opportunity presents you donate to your local EMS, Children’s Hospital, Dr. Anne Comi (Kennedy Krieger) & the Sturge Weber Foundation.
