Angiomatosis and AVMs

I have a 4 yr old daughter that have had 2 strokes for AVM bleeding. That was how we discovered it. She had a life saving craneotomy, embolization and the last time she had an angiograph done they told us that right now what she has is untreatable. After that she had a small bleeding. They also told us she has a lot of angiomatosis which and bleed easily and that grown during the last month. The only thing we can rely now is our faith in God and the hope that one day we presence a miracle. Does any one have heard about this or has a similar case that share any insights. Thanks.

I just want to reach out to you and say your daughter and your family is in my thoughts and prayers.

Rachel