# Nikki Lilly

**URL:** <https://avmsurvivors.org/t/nikki-lilly/16765>\
**Category:** Facial AVM\
**Created:** [February 6, 2017, 8:18pm UTC](https://avmsurvivors.org/t/nikki-lilly/16765 "2017-02-06T20:18:35Z")\
**Posts on this page:** 4\
**Page:** 1

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**Author:** ![DickD](https://avatars.discourse-cdn.com/v4/letter/d/9de0a6/32.png) [@DickD](https://avmsurvivors.org/u/DickD)\
**Post date:** [February 6, 2017, 8:18pm UTC](https://avmsurvivors.org/t/nikki-lilly/16765/1 "2017-02-06T20:18:35Z")

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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](https://youtu.be/dop6JIlBtec) – and her positive outlook on life is an inspiration for everyone.

Nikki has a facial AVM.

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**Author:** ![JD12](https://avatars.discourse-cdn.com/v4/letter/j/ad7895/32.png) [@JD12](https://avmsurvivors.org/u/JD12)\
**Post date:** [February 7, 2017, 1:39am UTC](https://avmsurvivors.org/t/nikki-lilly/16765/2 "2017-02-07T01:39:22Z")

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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.

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**Author:** ![Elizabeth3](https://yyz1.discourse-cdn.com/flex027/user_avatar/avmsurvivors.org/elizabeth3/32/5783_2.png) [@Elizabeth3](https://avmsurvivors.org/u/Elizabeth3)\
**Post date:** [February 11, 2017, 12:54pm UTC](https://avmsurvivors.org/t/nikki-lilly/16765/3 "2017-02-11T12:54:12Z")

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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.

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**Author:** ![DickD](https://avatars.discourse-cdn.com/v4/letter/d/9de0a6/32.png) [@DickD](https://avmsurvivors.org/u/DickD)\
**Post date:** [February 20, 2018, 9:51pm UTC](https://avmsurvivors.org/t/nikki-lilly/16765/4 "2018-02-20T21:51:31Z")

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All…

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

> **[New treatment hope for vlogger Nikki](https://www.bbc.co.uk/news/av/health-43134173/cancer-drugs-could-help-nikki-s-blood-vessel-disorder)**
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> Scientists uncover faulty genes behind a rare blood vessel disorder and say cancer drugs could treat it.

Richard