Emma Fretwell, United Kingdom (UK)
Lola was born with a quiet visable Kasposiform hemagioendothelioma with Kasabach merritt. Sadly this was misdiagnoised twice as a hemangioma & and vascular malformation. She is under sheffield childrens hospital & great ormand street. Currently on no treatment but treated kms with steriods & 23 doses of vincristine. We have lola facebook group, which we help support & try get advice for people all over the world to help. Also just offering support.