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9 January 2020

Tom Dyer – Table Mountain

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14 November 2019

Nikki Lilly Youngest Ever Bafta Special Award Winner

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6 November 2019

The Butterfly AVM Charity Dinner and Dance 2019

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6 November 2019

Nikki Lilly Speaking on ITV London NEWS

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6 November 2019

Vascular Anomalies Special Interest Group brings together a range of specialists this December

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6 November 2019

BREAKTHROUGH IN AVM RESEARCH!

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16 September 2019

The boy was dying. Zebrafish helped save his life

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7 February 2019

The Butterfly AVM Olympians

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The Butterfly AVM Charity

2 days ago

The Butterfly AVM Charity
www.butterflyavmcharity.org.uk

www.butterflyavmcharity.org.uk ... See MoreSee Less

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That’s amazing!! šŸ¦‹

Wow, amazing šŸ˜

šŸ™šŸ»šŸ’•šŸ’•

The Butterfly AVM Charity shared a post.

3 days ago

The Butterfly AVM Charity

Hi all! Please save the date everyone - we promise you an amazing night of fabulous entertainment for two incredible causes ā¤ļøā¤ļøā¤ļø

The Butterfly AVM Charity
Barnet & Chase Farm Hospital Charity ... See MoreSee Less

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3 days ago

The Butterfly AVM Charity

Well done Lara x ... See MoreSee Less

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GNA11 mutation as a cause of Sturge Weber Syndrome - expansion of the phenotypic spectrum of G-protein related mosaicism and the associated clinical diagnoses

www.jidonline.org

GNA11 and GNAQ are highly homologous genes encoding different GĪ± subunits of the GĪ±q subfamily of heterotrimeric G-proteins. GNAQ mutation mosaicism has previously been found to cause Sturge-Weber syndrome (SWS) and isolated capillary malformations(Shirley et al., 2013). We recently described post...
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Thank you NikkišŸ’•šŸ’•šŸ’•

The Butterfly AVM Charity shared a Page.

6 days ago

The Butterfly AVM Charity

Today we are featuring another facebook page called
Semblance of Normality by Claire Withnall who suffered a brain hemorrhage caused by an AVM.

ABOUT ME

To understand me and the changes to mine and my families life you would have to know that pre brain hemorrhage/children I was a solicitor.

Before the brain hemorrhage I was a very active mum. I want to blog now because I hate being bored, I want to help other disabled young people - this is not a position you expect to be in in your 30ā€™s (!) and I hope it will be interesting to others.

A bit about me:

I am 36 year old wife and mummy to a 10 & 8 year old.

I was going to go into lots of detail but suffice to say I had a big brain hemorrhage caused by an AVM (Arteriovenous Malformation) causing a stroke - type 'AVM' into a internet search engine if you are interested.
or go to www.butterflyavmcharity.org.uk

I was born with it and I could have had a bleed at anytime. Mine bled and now I spend all day/every day striving for 'a semblance of normality'... Yes, it was rubbish and yes, I wish it hadn't have happened but it did and there isn't anything I can do about it. I don't want to dwell on it, I just want to make my life as easy and 'normal' as possible.

Anxiety & Me

I never thought I would have to worry about anxiety.

Stress and depression happened to other people. I'd seen it affect others but nope, not me. I was working in a high-pressure environment which l loved and I was completely ā€˜togetherā€.

But after my brain haemorrhage in 2013, I started suffering really bad anxiety.

To be honest, I defy anyone to go through what I did with a young family and come out the other end feeling completely fine.
There are no two ways about it. The haemorrhage I suffered was BIG and I am incredibly lucky to be alive.

In fact I very nearly died and for six months afterwards I had to live with the fear (and trust me, I was terrified) that I could have another bleed without any notice and die.

That was until I chose (!) to have another (Iā€™d already had several) very big and very scary brain surgery where there was a substantial risk of death or further injury.

As a mother to two young children, I spent the whole time trying to be brave. Hard doesn't even come close to describing how this was! No wonder I had big sleep problems and developed major anxiety.

Now I worry about everything - a lot. I try not to let it show or let it overtake me but trust me, I constantly worry. Just writing this post has taken an awful lot of strength but I know it is important to talk about.

I am literally worried all the time about everything ā€“ you can read my 'Many Joys of Being Disabled ' posts to see all the extra stuff I get to worry about on top of all the normal things. Lucky me- no wonder I struggle!!

I feel very sorry for my husband - he married a confident girl. Now, I constantly feel like I am walking on eggshells and the next disaster is around the corner ā€¦ but hey ho there isn't much I can do about things ā€“ and the good news is that in all likelihood, my recovery will continue and my mobility and speech will get better.

For a long time I wouldn't have written this because I didn't want people to know about it. It was too private. Plus at first I didn't really accept that I had a problem (everybody worries, right?!).

I thought admitting anxiety might cause me problems if I ever wanted to work again. However I am no longer embarrassed or ashamed by having an anxiety problem. Also, letā€™s face it: I have been out of law for 10 years, sound different, can't drive and have substantially reduced mobility. I don't think me talking about anxiety (which I think is understandable) is going to be my biggest problem!

To be honest, it actually helps now that I can see it as an illness - everyone worries, although I have to remind myself, not like me. I just manage it as best as I can.

Nowadays, I can catastrophise everything - literally the smallest thing and in my head it turns into the end of the world.

I still fear death/disaster - I always think of that this might be the last time I do 'x' or ā€˜yā€™ because something bad will happen. At least I am always surprised/pleased when I get to do it again!

Worries go around and around in my head on a loop ā€“ and it is awful. For example, anxiety ruined my whole weekend recently and left me sobbing like a loony in the supermarket over an upsetting situation.

To cope, I have sessions with a counsellor every 6 weeks, which is about right for me. For the first few years I had weekly sessions with a clinical psychologist which were reduced to monthly sessions with an assistant psychologist before my current anxiety busting schedule of seeing a counsellor every 6 weeks.

Part of the difficulty in the story of my brain haemorrhage was that in the beginning I couldn't really comprehend what had happened.

Iā€™d literally gone on holiday to Wales, said goodnight to the kids, went to bed one night and overnight everything changed.

Iā€™d had a massive brain bleed and almost died. In a coma for a few days.

Now I sounded different, had been without my children for 3 months (not having seen them at all for 1 month), was stuck in a wheelchair and was living with my in laws.

That's a lot of change without factoring the strains it had on relationships between friends and family, bringing up my children and work!

I have always seen my counselling sessions as my hour to moan. My husband, who had already come to one appointment, offered to come with me again and because it was my hour to moan I said 'no thank you' (I couldn't do that if he was there!) OK, I have far less to moan about these days and every 6 weeks is about right but brain haemorrhage or not, I think everybody should have an occasional hour where they can just whinge.

I have tried loads of other things which have helped my anxiety: counselling, hypnotherapy with Elle Torry at Stour Valley Hypnotherapy, daily meditation, Emotional Freedom Technique (EFT) with a lady called Ruth Baker and Neuro Linguistic Programming (NLP) with a lady called Wendy Smith at Red Castle Consultancy to name but a few. I also find Rescue Remedy and a herbal remedy called Arsenicum really useful.

It's funny because a lot of the things I have tried to help with my anxiety, things I would have discounted before as 'fluffy' but have turned out to be really useful.

The things I have tried I might have once been sceptical about but I'd be the first to hold my hands up and say I was wrong to think that. In my situation you would try anything to make life easier and I am SO glad I went outside the box!

Now, I absolutely love an app on my phone called Headspace. I take 10 minutes most days for me and do a daily meditation. I would thoroughly recommend it ā€“ I like its clear and no-nonsense approach. (I do want to make it clear here Iā€™m recommending them on my own, and I am not being sponsored by or affiliated in any way with Headspace). I just like the app.

Overall, six years on, things are generally better for me. I can go outside (see my post "Things that make my life easier/better: access to the outside ā€). I do the school run on my scooter, my extreme tiredness is better and I live in my own house. This has all helped make my anxiety manageable. No, it is not gone, and I still have times where it is all encompassing but I know that it will end and it will be manageable again.

It can be very hard sometimes but I am a lot better at standing up for myself and saying my health matters.

I am also far kinder to myself. I take time for myself and put myself, apart from my children, first (this was actually hard for me because I have previously put friends first).

I have also come to realise that how much and what I do has a huge knock on effect on me and therefore my family. It is not fair on them if I go ahead and do something I know is likely to affect me.

I don't want sound completely depressed because I don't think I am a generally depressing person! I just get on with things and it is heaps better now. I do lots more and my confidence is back. Not so long ago I wouldn't even phone the school, but last year I was interviewed on BBC Radio 4. And I am quite happy to tell various people that their system is rubbish if it isā€¦

Now I tell myself:

ā€˜Onwards and upwards, Claireā€¦ onwards and upwardsā€¦ā€™

To keep up to date with Claires Blog
click on her link www.facebook.com/semblance-of-normality-761528370858372 ... See MoreSee Less

semblance of normality

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The Butterfly AVM Charity

1 week ago

The Butterfly AVM Charity

In Memory of Satinder Heir

I am running the Liverpool 2020 marathon for The Butterfly AVM Charity Limited because My father passed away due to an aggressive AVM

In memory of: Satinder Heir Event: Rock 'n' Roll Liverpool Marathon 2020, 24 May 2020 Start fundraising for this event

In May 2019 my dad had another rupture in his brain due to an aggressive arteriovenous malformation (AVM). The presence of this AVM had been found by doctors some years ago however, due to the complex makeup of this AVM and the aggressive nature of it, he was advised that surgery could lead to a high probability of death.

For those of you who do not know, an AVM is a tangle of abnormal and poorly formed blood vessels. They can occur anywhere in the body and are of particular concern when they are located in the brain. Brain AVM's occur to less than 1% of the general population.

Dad was in and out of consciousness for 5 months however he never really reached the point of being able to communicate. He would only be able to open his eyes every now and then. He also had further
bleeds whilst in hospital which completely shut down his brain. The doctors advised that the likelihood of him coming back from this bleed was extremely low and they were right. He passed away on 19th September 2019 and I am running this marathon in memory of him and to raise funds for The Butterfly AVM Charity.

For those of you who know me, I have never really run before, so running a full marathon is a hell of a challenge! I am on a 16-week training programme and it is tough, but rewarding, especially from a fitness perspective.

I am hoping to raise as much money throughout my journey from now until the big day. The doctors said that my dadā€™s AVM was the most complex they had seen in their entire medical career, so anything which can contribute towards AVM research will be much appreciated.

I will be uploading updates of my training journey on a regular basis so you can keep informed šŸ˜Š.

Thank you!

www.justgiving.com/fundraising/ps-heir ... See MoreSee Less

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Read PS's story

www.justgiving.com

PS is raising money to help The Butterfly AVM Charity Limited
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Hi Nikki. Could you tell us where the donated money goes too. I fully support your charity and donate to it when I can. My son has an avm and I pray there will be some treatment available to him in the near future as he is just under conservative care at the moment.

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Instagram post 2192744888365708059_14441900738 #Repost @nikkililly_ 惻惻惻 i donā€™t even know what to say... thank you so much @bafta for honouring me with SUCH a special award, i still canā€™t believe itā€™s mine. i couldnā€™t have had a better night and couldnā€™t have spent it with more talented, lovely, humble and kind people. massive well done to my girl @lindseyjrussell for winning presenter of the year! i love u, no one deserved it moreā˜ŗļøalso so good to finally meet and chat with @bellaramsey! congratulations on your win beautiful. you are immensely talentedšŸ’“thank you to @cbbc for taking a chance on little 11 year old Nikki, enabling me to tell my story and helping me to break down the barriers of what so many today believe they ā€˜shouldā€™ look like or how their life ā€˜shouldā€™ be. there is so much pressure and stress on my generation from all different angles, so i hope in my tiny corner of the internet or tv i can be an escapism to those who need it. just THANK YOU, THANK YOU, THANK YOUā£ļøthis is a night that i will cherish forever.
Instagram post 2191466142291570018_14441900738 #Repost @officialtgiof So Proud of you Nikki x 惻惻惻 Fifteen year-old YouTuber, presenter and charity campaigner @nikkililly_ this week became the youngest ever recipient of a @bafta Special Award, celebrating her outstanding contribution to children's media. She's rightfully been recognised for raising awareness of social issues and inspiring young people around the globe in the face of extraordinary personal challenges. Nikki was diagnosed with arteriovenous malformation at six years old; a life-threatening medical condition which has resulted in a visible difference to her physical appearance. Despite this, she started a vlog aged just eight, covering topics including disability, cyber bullying, #mentalhealth #baking (she won Junior @britishbakeoff in 2016) and #beauty. Oh and she's also launched the @butterflyavm charity with her Dad and has interviewed the likes of @jeremycorbyn and Teresa May. And let's not forget the @prideofbritain ā€˜Child of Courage' award she scooped too! She's achieved all these mind-blowingly inspiration things, while enduring 38 operations to help her disability. She's #brave she's #strong she's beautiful and she's an inspiration to every girl, teen and woman on the planet. Described as a 'pioneer for her generation', we think you're truly incredible Nikki! šŸ„° #wcw #embracingdifference #live #learn #thrive #inspirationalwomen
Instagram post 2187729783466926354_14441900738 FUNDRAISER FRIDAY! . Good morning to all our followers. . @koupeslondon will be donating a percentage of takings, to our charity, from the Monkfrith School Xmas fair. . Thank you so much!!!
Instagram post 2182786573434883407_14441900738 FUNDRAISER FRIDAY! . Tyser Girlā€™s Northumberland Coastal Marathon . In February 2020 Annabel and Emilia will take part in the Northumberland Coastal Marathon. . Please take a moment to read their story and to understand the story of their friend Amy. . Link in Bio
Instagram post 2178408800402617313_14441900738 @jamieoliver thank you for your continued support for our @nikkililly_ it is very much appreciated. The kindness you have shown will be remembered always.
Instagram post 2177595393474814043_14441900738 Itā€™s ā€œFUNDRAISER FRIDAYā€ Every Friday we will dedicate all social media platforms to those who have raised funds for our charity. We canā€™t wait to share your achievements, along with pictures and videos, with our followers. But we do need this content! Please email us at pr@butterflyavmcharity.org.uk If you are in this picture, message below and we will tag you in
Instagram post 2177070767363360987_14441900738 We are so proud "Nikki has been officially recognised at next month's British Academy Children's Awards, where she will become the youngest ever recipient of a Bafta Special Award." BBC . @nikkililly_ @bafta #butterflyavm #charity . Link in bio
Instagram post 2176412009205533491_14441900738 Thatā€™s a great top 10! . Can you think of any other ways? . Comment below or email us at pr@butterflyavmcharity.org.uk with your idea(s) #charity #avmbutterfly
Instagram post 2175533468259710125_14441900738 Itā€™s true. . Our charity has greatly helped the lives of AVM sufferers and their families. #charity #butterflyavm
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