Rare Congenital vascular disorder. Do you know? For my daughter I hope so

Thank you for the welcome! I’m excited to be here and to be able to be In the Know.
My name is Jeanette. I am here for 1 reason only really and that’s my daughter. Her name is Maddison. I believe that you guys or you AI’s…lol are the only ones that could have a solution for her. As her mother I have the obligation and a heart felt tug pulling me to post my request on this forum.
She was born with a rare congenital vascular disorder Klippel Trenaunay Syndrome. It had been 18 years of anxiety, torture,emotional roller coaster. But mostly it’s been very hurtful to the soul. Why? because everything I know or have learned about her condition I have had to find out for myself because not even the doctors know anything other than what is already available on the internet. and that is NOTHING!! EERRR It’s been a long road so far.
I am looking at what is being accomplished and new things created everyday that I see could be applied to her problem, possibly. However no new anything progressing in her condition. No treatments or cure possibilities. How? is what she has so terribly complicated that nothing really can be done or attempted?
I won’t go into anything more unless someone has a suggestion or direction? they could point us in? If anyone wants to contact me and ask additional questions I would be more than happy to respond. I feel this may be good platform to pose our request for help.
Thank you all for the opportunity to be part of the future.