@JLardi Hello there and welcome to AVM Survivors Network! Oh, so you’re from the home of one of the best NBA teams, Miami Heat! Great! Are you a fan of basketball? By the way, how is your son doing? We always love welcoming a family here on this site and we’re so glad that you found this community. I’m so sorry to hear about your son’s tough journey. He must be very lucky to have a mom like you and I am very much hoping for his fast and full recovery.
If you have any questions, please feel free to reach me out! Just click my avatar (the circle with an “E”) and it will take you directly to my profile and from there you can message me. You can also make a new post about your questions on this site, just click “+ New Topic” under the search icon!
Update on Jake. His original AVM remains successfully embolized but a new AVM has formed. He went through gamma knife radiation in April. Results should be seen in a year or two. In the meantime, we pray the new AVM does not rupture.
Jake is a warrior and after 2.5 years he continues his PT OT Speech Yoga Pilates and workouts in effort to return to “normal.” God bless this kid - he’s a fighter although its not been a road without hurdles.
I want to thank you for this forum. Hearing others stories of this rare disease provides some comfort and I am grateful. Thank you.
It’s great to have you here and I’m glad you’re finding some encouragement in really difficult circumstances. Your post elsewhere today is very poignant and I think helpful and that’s what this is all about.