Seizures and glaucoma at birth. Purple facial birthmark. Lifetime of treatment. No cure, yet. Help us help those with port wine birthmark conditions.
Real LifeImagine if you or a family member were born with a rare disease (under 200,000 cases) that rarely receives attention from the media, research and/or medical community it deserves?
Imagine holding your premature infant, doctors and medical staff not knowing what is wrong, suggesting possible bruising or port wine stain, possible blindness, possible mental retardation - they are not 100% sure as they are reading the same information you are from the web.
Imagine your daughter having her first seizure at 2½ years old, needing immediate brain surgery for a possible aneurism or brain cancer to finally learn she has Sturge-Weber syndrome. Imagine all of this within a two day span with no prior symptoms other than a port wine stain on the top of her head. Imagine being told the seizures would be recurrent, she could go blind, become mentally retarded and she could possibly die by the time she turned 5 years old.
Imagine it is your job to educate doctors about your child's medical condition call Klippel Trenaunay Syndrome (KT) and you have to research the treatment plans for your child because the condition is so rare. Imagine worrying about the veins taking over part of his body, stopping his body from growing the way it should.
Thank you for your consideration to help families you may never meet, with conditions you may never have heard of before. The Sturge-Weber Foundation started with a spark and we need you to help carry the torch.