Oh my. I want to give you a huge hug. Thank you for sharing your story. Especially when there is no happy ending….yet. You are so not alone, as you already know. Here in the states, there’s a group of moms and doctors launching a research project called Documenting Hope (https://documentinghope.com/) to scientifically document how to heal kids with chronic conditions. Because you are right, there isn’t enough research to help these kids and their families who are suffering like you are. Hang in there. I hope your upcoming appointment is life changing, with many heart emojis!