We are so grateful to Lola’s mom, Emma, for sharing their journey with us.
Lola was born with a large visible kaposiform hemangioendothelioma with kasbach merit. She was misdiagnosed twice, then had propranolol steroids and vincristine.
At the moment, Lola is not on any treatment and the kms part is resolved. We have a Facebook page about Lola’s journey, where a lot of parents contact us to ask for help & advice. We share the wonderful work that VBF does, too.
Raising awareness and giving support to others is important. as we hardly knew anyone at the hard time of treatment to help & support. Now we have a wonderful khe family.