Cheers for Sturge-Weber Awareness Month!
Cheers for the Sturge-Weber Foundation!
Marco is seven years old and, as most of you know, he was born with a severe, bilateral case of Sturge-Weber Syndrome. He has the excess capillaries in both sides of the brain and in both eyes. His port-wine birthmarks (the extra capillaries on the skin) are on both sides of his face and on a few other areas of his body.
Marco suffers from a seizure disorder, glaucoma, hypothyroidism, adrenal insufficiency and a growth hormone deficiency. He takes 15 medications and visits at least 10 doctors regularly! He is legally blind and developmentally disabled. He can sit, hold his bottle, roll around and play with his special toys but he is fully dependent on us and his great caregivers and teachers for everything else.
Yet Marco cannot be defined only by his disease. He is our strong-willed and fun-loving boy who has the most contagious and adorable deep laugh. His hugs and light pats are incomparable. He loves attention from his siblings, music and the voices of other children. He is also an adventurer – the faster he goes on his sit ski with his instructors, the happier he is. This probably explains why his school teacher has nicknamed him “my wild child”. He loves life!
To our shock last October, Marco almost lost his life. Severe seizures made him stop breathing. Mommy arrived with Marco just minutes on time to the emergency room. Marco went through 12 difficult days in the hospital and it was a stark reminder of how life-threatening Sturge-Weber Syndrome can be. His recovery was a moment of great joy. We were so impressed by Marco’s resilience. He is a fighter.
His crisis and his recovery were also reminders of all the things for which we are grateful. One of them is the Sturge-Weber Foundation (SWF). Thanks to the SWF, we have had a community to lean on and information that allowed us to identify Marco’s endocrine problems early on. The research the Foundation has promoted and financed provides us with a continued and expanded understanding of the disease and gives us hope for new treatments and perhaps…one day…. a cure.
We are thanking and cheering on the Sturge-Weber Foundation by hosting our wine tasting evening for Month of Awareness (May) and we hope you can join us!
If you cannot join us at the wine tasting (we know some of you are far away or have other commitments!), we hope you can consider a small donation to support our efforts. Every donation is greatly appreciated. Marco sends you all one of his superb hugs!
Thank you and Cheers,
Marco and family (Rolando, Linda, Roberto and Francesca)