Emma Fretwell, United Kingdom (UK), SYK

Lola was born with a quite visible Kaposiform hemangioendothelioma with Kasabach-Merritt Syndrome. Sadly this was misdiagnosed twice as a hemangioma & a vascular malformation. She is under care at Sheffield Children’s hospital. Currently, she is receiving no treatment for her KHS, but her KMS is treated with steroids & 23 doses (to date) of vincristine. We have Lola Facebook group, which we hope will help support people all over the world. Also, as an Ambassador we are just here offering support.