Emmalyn's Story

Our precious littl Emmalyn Marie was born on november 19, 2013 with a rare vascular malformation and lymphatic malformations. so far our diagnosis of klippel trenaunay syndrome is very consistent with her symptoms. we had never heard of kts until now. we understand it is a pretty rare syndrome and it could lead us down a variety of paths on our journey. there is no cure and it is known to cause hyper trophy or enlargement of affected limbs, in her case her right leg. she has the port wine stain from right buttock to her knee and her entire leg is a little over an inch bigger in diameter than the other. she has taken everything in stride. every few weeks she is fitted for compression garments to help control the growth of her leg and the circulation as well. she also has lymphatic cysts in the same leg. as of now there are a few paths we could take, surgery to inject a medication into the cysts to shrink them and laser surgery or plastic surgery to correct the blood vessels on the surface of her leg that tend to bleed regularly. a lot of her expenses and doctors are "out of network". we are working with our insurance to change this. However the financial situation we have been put in is very stressful.