E, I'm so sorry to hear about your long struggle. Within the last three weeks our two year old son was diagnosed with a lymphatic malformation in his neck. He will undergo scleratherapy next week. We have been working with an amazing team of doctors in Cincinnati, Ohio led by Dr. Denise Adams. If you "search" her name on this site you'll find her contact information. I know that Children's Cincinnati sees patients from all over the world. Hopefully Dr. Adams and her team could further help you.