I would love to talk with you I also have a young daughter, she's 4 now but was diagnosed with the the same condition when she was 1 year old. I have been searching for someone to talk with.

It is my granddaughter, and she is 14 months old. We are trying to learn all we can as well. There is a group on Facebook-put Plasminogen Deficiency in the search and it will pop up. It has about 800 members but there are two women who are very knowledgeable (for as much info as it out there!) and they are great because they both have children with the condition.