Emma was a strong, vibrant, beautiful person whom everyone loved. Her journey started in late 2009 with stomach pains that ended up turning into a rupture of her colon. Doctors had no clue why for a year, until another rupture and another major surgery. They finally diagnosed her with vascular EDS through genetic testing. We (her mom and dad) were tested for EDS and neither one of us had the gene, so they decided it was a mutation of her gene. Emma lived with this for five more years with many surgeries and a stroke that was caused by a ruptured carotid artery. She tried Botox for her spasms in her legs, arm, and neck, which took very little pain away. She went through so much for such a young woman, in constant pain, having a colostomy, losing the use of her left arm, and tons of therapy to try to walk again. Her final battle was from a herniated colostomy with further surgery; and four days later she passed. Emma was 26. We must find a cure or better treatments for this disease and the doctors must be educated on EDS. To this day, many doctors to whom I mention vascular Ehlers-Danlos syndrome still have barely heard of it. Every medical person, regardless of specialty, must be educated on this disease. We continue to raise funds for this cause. Having vEDS is a nightmare for all involved. You never know if when you leave to go anywhere, or even the next room, or go to sleep, that some organ will rupture and you never see them again. We miss Emma so very much.
(Patricia Warner)
