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I am a parent living in England UK and i have a son called Alex who has some very similar symptoms and like your daughter the Dr's do not know the full extent of my sons illness. At the moment Alex is classed as having Ehlers-Danlos vascular syndrome with marfanoid features because that is the closest at the moment.I belived Alex had Loeys-Dietz syndrome for a while. But Alex has a other symptoms that are not related to EDS IV, Marfan's or Loeys-Dietz. I got in touch with Dr Loeys in belgium buy like your daughter Alex did not have the vascular problems that come with Loeys-Dietz syndrome. I will describe my son's symptoms the best i can as i am not a Dr so i do not know as much about Alex as you do about your daughter. My son was born 4 weeks premature and he had long fingers and feet but his toe's are claw like. Also he has very old looking skin that is so thin and veiny and bruises and scar's very easely. Muscle tone is shockingly poor with bird like legs. Alex is so thin he looks like skin and bone and when he was a baby i was accused of making him an anorexic. As Dr's looked at my thinnes and just assumed i was anorexic. So from that day i knew i was on my own and that i would have to find what is wrong with Alex myself. Anyway the rest of his symptoms are wide spaced eyes with large eyes that look like they are staring at you. And he has unusull eye shape at the bottom of the eye. His head looks small for his body like it has fused slighty early. Alex has a cleft lip and a full cleft pallet with a split uvulva. Crowded teeth with 2 fang shaped teeth at either side. A high arched pallet and a very small mouth with thin lips and a small jaw line. Small thin ears that slightly stick out and lean back. Has had Pyloric Stenosis at 6 wks old and had a collapsed lung at 12 wks old i think it was called a numathorax. I was told the lining of his lung was very thin and weak. Had a hernia at 4 yrs old.His cleft lip repair was successful but the pallet repaire's have not taken well at all. Has hypermobility of the knees, ankles, hips, shoulder's and can bend his thumb back to his wrist. His vascular system is fine and his heart is fine and he has done well in surgery even though his body looks shockingly fragile. Some of his toe nails are mis-shapen and grow different. Had severe speech, learning and development delay's. Alex still can not talk properly his speech is still very poor. And find's it very difficult to read and understand words, and wrighting is difficult and poor. But alex enjoy's and understand numbers very well and is quite clever in other things.