My son Carver (on right) and I are trying to raise money in honor of his great friend Ryan McIntyre (on left) who was born w/ Sturge-Weber Syndrome. I will be running the Falmouth Road race in August as part of the Sturge-Weber team helping to raise money and awareness for the Sturge-Weber Foundation (SWF).
Carver's friend Ryan was born with a port-wine birthmark covering his entire left eye and forehead. He was diagnosed with Sturge-Weber Syndrome (SWS) at 6 months of age and had his first seizure at 9 months. Ryan’s seizure activity had been relatively well managed through medication until September 2008 when he began having seizures almost daily for an extended period. Fortunately, his doctors managed to get Ryan's seizures under control through trial and error of different medications. Over this past 18 months Ryan has had only 2 seizures. Ryan has had a tremendous year of growth both physically and emotionally while enjoying kindergarten.
For better or worse Ryan owns this Syndrome for the rest of his life. There is no cure and no 100% full proof way of preventing seizures. He will always be at risk for seizure activity, glaucoma and learning disabilities. His family and doctors are in a constant state of striving to maintain the perfect balance of medication so that he is not over tired but effective enough to protect him from seizure activity. That is why funding research to better understand this syndrome is critical and will hopefully lead to a cure one day.
Please help Carver and me to raise some money for this cause. Donating through this website is simple, fast and totally secure. Thank you so much in advance for your support!
Kathleen and Carver Porter