Dear wnarubi and Jacsha, I’m anew member of this group and read your stories. I am so sorry about to hear you have suffered so much. I am writing to both and all who are in the same situation so please read my entire message. As a mother, I am addressing this message directly to Jacsha, My son also had a grade 5 AVM which was inoperable. I say “had” because he was recently cured! He was diagnosed when he was 15 years old and had 14 bleeds, the last was very bad and left him in bad shape. His doctor is one of the best in the world, Dr. Alejandro Berenstein in NYC. Michael had had many embolizations over the years, just to try to minimize the danger of the AVM. Last year Dr Berenstein did an angiogram and felt there was nothing else that could be done safely, but he told us about a young doctor in Germany who has been doing great work, developed new techniques and had successfully treated incurable AVMs. Dr Berenstein had seen his work personally and knows Dr Rene Chapot in Germany, so he put us in contact with him. To make a long story short, we just came back from Germany and Michael is cured after 3 embolizations.
I too am a Christian believer, and I know what you say about your faith getting you through this. It is a very tough journey to see your child with such terrible decease and not be able to help. God gave me the strength through our 19 year journey and I truly believe that it is answer to prayer that God has given Dr Chapot the skills and knowledge. During Michael ‘s last surgery, Dr. Berenstein was there and observed Dr. Chapot. I don’t know if he is ready to perform the surgery yet, and also Germany has some equipment that has not been approved in the US. jacsha, please take your daughter to see Dr Berenstein in NYC, he specializes in pediatric vascular neuroradiology. If he can’t help your daughter he will put you in touch with Dr Chapot. And don’t let the idea of money stop you. I thought such an expense would be impossible but we placed our trust in our father in heaven who can do all things, and through fundraisers and help of family and friends, we did it. Feel free to contact me if you want.
May God Bless you all,
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So happy to hear your story 
️ Dr. Berenstein was the one who performed Juliet’s embolization and we send him MRA/MRIs yearly. I will definitely reach out to him and his team about this doctor in Germany. Thank you so much for sharing your story. May God continue to bless you and your family.
Great! I’m glad to hear it. I did hope your daughter also can be helped. May God be with you.
Best,