AVM Survivors Network

Nikki Lilly


I don’t know how many people are already aware of Nikki and her YouTube vlogs but this brave 12-year-old was on BBC TV this morning.

I thought this video might be helpful for people – Nikki’s explanation of her AVM – and her positive outlook on life is an inspiration for everyone.

Nikki has a facial AVM.

Helpless, nervous, and seeking support
12 yo son 12 embolisations in on extracranial avm
Ever connection between bloody noses and AVMs?
Had AVM, now have them again

Thanks so much, my 11 year old son and I just watched this and a couple of her other videos. She is certainly an incredible young lady, wow.


My AVM sits on top of my speech-motor center of my brain, and I had one blood stroke 3 years ago now at age 67. It took me quite a while to walk again after that stroke. I agree with you–Nikki is inspiring. Thanks for responding to me.



An interesting update on Nikki and work at UCL & GOSH. Anyone heard of gene therapy for AVMs?


AVM and amputation