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AVM Survivors Network

Nikki Lilly


#1

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
#2

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.


#3

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.


#4

All…

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

Richard


AVM and amputation