The Green family is trying to raise money for their daughter’s life-saving surgery and it’s now becoming a race against the clock.
18-year-old Ylena Green is suffering from Ehlers-Danlos Syndrome, a rare genetic disorder that makes her neck extremely sensitive in risk of being dislocated, even with the slightest movement.
EDS is a string of inherited disorders of the body’s connective tissue. There are an estimated 1 in 2,500 to 5,000 people suffering from EDS worldwide. To learn more about EDS, click here.
Unfortunately, there are only two people in the entire world who have the chops to perform the very complicated neurosurgery required to save her life, and they live in opposite corners of the earth. One in Barcelona and the other in DC.
The tricky surgery has an 80-90% success rate. Ylena’s worried parents, Letitia and Martin are desperately trying to raise the necessary £90,000 for the procedure and all of the costs that come with it. Without the surgery, she could die within a year.
Ylena has already dislocated several limbs and is feeding through a tube. In February, things grew worse. She was no longer able to get up from her bed. She hasn’t left since then. According to a recent MRI scan, her cervical spine is so loose that it’s dislocated the axial area for turning her head. In other words, she could easily be decapitated. The only thing holding the head in place is a collar.
Traveling to Barcelona on a plane is not a possibility, since its too risky. The transportation would have to be done via ambulance.
Ylena lived a regular healthy life until the age of 12, when she began to experience daily dislocations of her knees, wrists, and hips. When she collapsed, they admitted her to the hospital, and thus began a complicated life.
Despite the expiration date and diagnosis, Ylena still dreams of becoming a doctor some day. Watching doctors do their work on a regular basis inspires her even more. She’s also doing well in school.
“She did really well, she got four B-plusses and we are so proud,” said letitia to the herald scotland. “She will be disappointed she didn’t get A’s, though. She’s a smart girl. We are hoping this operation will help Ylena, regain a decent level of function.”
