LAURA'S STORY

Laura's Story

Thought of the Month: Good trees bear good fruit. Don't worry about the “fruits of your labor,” money, success, other material things, or even a cure for AVM. Let’s just be committed to rolling our sleeves up and doing the work. Just do the work and keep persevering. As Laura Clement’s story us, we will reap the dedication we sow…


Hometown: Bagshot, Surrey

When I was younger, I wanted to be: A hairdresser

In 10 years, I will have: a happy retirement

My life long goal is to: to have my children's book published

If I could change one thing about the world, I would: make everyone nice

My favorite quote/scripture/affirmation statement is: Don't judge a book by its cover

1) Describe the type of AVM you have? What was the first sign?

A high flow AVM in my right hand at 8 yrs old after horse riding, holding the reigns. It was very painful.

2) How did you eventually come to receive treatment?

The doctor sent me to Hammersmith Hospital to see vascular surgeon Ms. Mansfield.

3) Who are/were your main doctors, where are/were you treated and how has your care been?

Ms. Mansfield did my first operation when I was 9yrs old. At 17, I had my little finger amputated as it bled continuously had continuous care when I had my two children at 40 (AVM get worse through pregnancy). I had a bleed. Dr. Yakes was over from America and said he could help. He did 4 operations over a few years. Now I have Professor Hamilton’s team with Dr. Brooks at Royal Free London. Everyone I have had has been amazing.

4) How do you feel your health will progress in the future?

My last operation went wrong, so I now have half a hand. The AVM is still active, so probably more operations.

5) How has having an AVM changed or impacted your life?

Living with an AVM not knowing what it will do next makes you live every day as if it's your last.

6) What has been your biggest challenge in the battle with AVM?

My last op coming to terms with half a hand (still now recovering)

7) What do you think a documentary about those surviving AVM can achieve?

Would be brilliant awareness, and a cure is essential. I would be happy to be part of it. Having lived 50 years with one, everyday I am reminded of it.

8) What are your hopes for the future of AVM research?

For a cure to help others.

9) What has been the biggest lesson you've learned throughout your journey thus far?

Never ever judge anyone who is going through a hard time, help them through a hard time.

10) What is your proudest accomplishment?

I looked after a boy called Thomas. I was his one to one. He saw Nikki on Pride of Britain, so [he saw something] visual, and he was then able to understand what I had. He is doing a bike ride 400 km in Wales in June [called[ Chase the Dragon. I am giving him a huge send off at my school in Ascot, so I need a famous band. Arranging other bits [as well]. Got a free bike for Thomas from a sponsor! Nikki is going to come to send off, so I want to thank her for everything she has done for AVM awareness. I want this to be huge and make lots of money for AVM research.

If you would like to donate to the fundraiser, click HERE.

NASTASIA'S STORY

Nastasia's Story

Thought of the Month: Remember your faith is not just about you. Your faith allows you to intercede on behalf of others. With every step we take in trusting God and refusing to crumble, we are able to better advocate for others spiritually and become a beacon of strength as we bravely live our lives. This is true of Nastasia Walden, an inspirational mother, helping her young son Gabriel fight through his vascular malformations. I am happy to present her story…


Hometown: Glennallen, Alaska

When my child was born, I thought: He looked just like his dad (And he still does). As a parent, I’ve advocated for my child’s health by: Being diligent. Doing research on my own. If we were told he had something, I studied it, and probably too much (haha). If I suspected he had something, I made sure someone looked into it.

In 10 years, I will have: I pray to have a child who is free of his vascular malformation.

If I could change one thing about the world, I would: Put an end to suffering. Of all kinds: hunger, emotional, physical.

My favorite quote/scripture/affirmation statement is: Psalm 27, the whole thing. However, if I were to pick my favorite part of it, it would be the last two verses: 13: I had fainted, unless I had believed to see the goodness of the LORD in the land of the living. 14: Wait on the LORD: be of good courage, and he shall strengthen thine heart: wait, I say, on the LORD.

Describe the medical challenge/condition/illness(es) of the person for whom you provide care? What was the first sign?

So Gabriel's malformation was visible at birth. He was born with a venous malformation of the left cheek and temple. The first sign of it was purple and red discoloration on the inside of his cheek. There wasn't any noticeable size difference until he was around 4 months old. His diagnosis has changed as he has gotten older. As of September 2016, Gabriel's diagnosis changed to Left Facial, Scalp, Occipital Venous Malformation with Left Facial Artery Arteriovenous Fistula. It was discovered that he also has a small venous malformation on the right side near his clavicle.

2) How did he/she eventually come to receive treatment?

He was monitored for the first year of his life. When he was a couple days shy of 1, he underwent a small surgical excision of some of the venous malformation that was beginning to ulcer. We went back to monitoring after that. Eventually, we decided to be more proactive and sought out of state care. Ever since, Gabriel has undergone 16 Ethanol Embolization procedures.

3) Who have been his/her main doctors, where has he/she been treated, and how has the care been? 

Gabriel's main Doctor is Dr. Wayne Yakes of the Yakes Vascular Malformation Center. This is part of the Swedish Medical Center in Englewood, Colorado. Gabriel's seeing progress, albeit slow. As is the case for this condition, you're fighting something that is actively growing and changing, so sometimes it is two steps forward and three steps back. 

4) How do you feel his/her health will progress in the future? 

I feel optimistic that one day he will reach the point that most of his malformation will be gone, and we will just monitor him for any new growth. I do believe he will lead a normal life one day. 

5) How has caretaking for someone with a medical challenge positively impacted your life?

There have been so many different ways. It has taught, me first and foremost, to trust God even when it makes no sense at all and even when you are terrified. Secondly, through watching the struggles my son has gone through, it's inspired endurance. It has helped me to be more grateful for the good times we have. Another way this has blessed us is through all the awesome people we have met along our journey. Many of whom have become family. I would not have handled all of this very well without God, family, and being able to connect with other families who fight this same battle.

6) What has been the biggest obstacle with battling a medical challenge from a caretaker’s perspective?

The unknown is always difficult for me. With us being so far away from his doctor, it is difficult when changes arise. For instance, when he developed the Fistula. That was a really scary time for me. I was assured by many doctors that his malformation would never take on an arterial component. So when his malformation began behaving like an AVM, I felt like I was losing my mind. Traveling as often as we do (roughly every 8 weeks) is also difficult. We have to leave Daddy and brother and sister back home in Alaska while we go. Then of course, paired with that is the lack of sleep (haha).

7) What do you think a documentary or other content about those surviving a medical challenge can achieve?

I think this would be an awesome resource to spread awareness and help encourage acceptance of those who look different than others.


8.) What are your hopes for the future of research for the medical challenge involved?

Well, ultimately I would love to see a cure. However, [for now] even more effective treatments that don't require general anesthesia. Or even ones that could accomplish more much faster than what we currently have. That being said though, I AM thankful that we have options at all. There are many many malformation suffers out there who don't.

9) What has been the biggest lesson you've learned throughout your journey thus far?

Trust God. The one event that I remind myself of often, to just remind myself to trust Him, is when we were facing the hurdle of fundraising for our travel expenses. I was really sweating being able to raise enough money to cover our plane tickets, hotels, food, and airport parking. Traveling from Alaska is, well, expensive! I was really overwhelmed by it all and one night I prayed, “God this is too big for me, but it isn't too big for You. I want to see what You're going to do.” The very next day another vm mom told me about a charity called Miracle Flights for Kids. This charity covers the costs of commercial airline flights for sick kids to get to their out of state medical care. This charity has flown us from Alaska to Denver 12 times now. This was an amazing answer to prayer.

10) What are three things you wish you had known as a caretaker or have learned that you feel could help other caretakers in your position?

First, ask the questions!!! This is something I still struggle with. In fact, I struggle with all of these. Ask the doctor the questions you have and don't worry about taking up their time. Second, don't ignore your gut. You have that intuition for a reason, don't ignore it. Third, don't be afraid to push. This goes along with both the previous points. If you feel more needs to be done, push for it.

RORY'S STORY

Rory's Story

There is an unmistakable surge of courage when I see fearlessness reflected in someone I can relate to. There is a fire ignited in my eyes when I see the blaze of bravery in theirs. My admiration for Rory is that of a peer and of a comrade. We are around the same age and have many similiar experiences in our respective journeys. Yet, he has become an example for me. He has, for example, posted a plethora of photos during his recovery process after a major procedure - the good, bad and the trying, while I've only posted a few abstract shots over the years. He has written in detail about an instance of cyber-bullying going as far as to post the offenders original, hateful comments for all to see. Rory living his truth so unapologetically has encouraged me to lean even further into who I am without feeling the need to shield those around me from my realities. Here is Rory's Story in his own words.


Hometown: Ayr, Scotland

When I was younger, I wanted to be: Marine Biologist

In 10 years, I will have: Nobody can tell what the future holds.

My life long goal is to: Remain healthy and happy, and to help to educate others about the subject of prejudice in order to try to prevent some other people from having to go through some of the feelings that I had to when I was younger.

If I could change one thing about the world, I would: I would love for people to not judge each other based on their looks, their race, their sexuality, their religion etc...I would love it if everyone got on well together so that fighting and wars etc. didn't occur.

My favorite quote/scripture/affirmation statement is: Never judge a book by its cover.

1) Describe the type of VM you have? What was the first sign?

I had a Venous Malformation of the upper lip and slightly into the right cheek. In November 2016, it was removed from the upper lip, but there is still some in the cheek. My parents first noticed the birthmark when I was very young because my upper lip was a little bit thicker than the bottom one and was a little bit misshapen. My mother also found that it was very difficult for me to be fed by bottle, so they took me to a doctor, and I was diagnosed with having a Venous Malformation.

2) How did you eventually come to receive treatment?

Both my parents, and also my doctors at the time, decided that it would be a good idea to have an operation before I started school.

3) Who are/were your main doctors, where are/were you treated and how has your care been?

My main doctors have been Iain McKay and Jo Bhattacharya, and I have mainly been treated in Glasgow, Scotland at the Southern General Hospital and at the Glasgow Royal Infirmary.

4) How do you feel your health will progress in the future?

I'm hoping that I remain healthy and fit as I'm really into fitness and eating a good diet.

5) How has having a VM changed or impacted your life?

I had to go through many horrible experiences with VM when I was younger, and even though they were not nice to experience, they helped me to become a kind and understanding person and to never judge anyone based on the way that they look.

6) What has been your biggest challenge in the battle with VM?

Before I had the VM removed from my upper lip, I would get stared at, laughed at, mocked, and pointed out in public all of the time which would make me feel very sad, and it made my self esteem very low.

7) What do you think a documentary about those surviving AVM/VM can achieve?

I think that it sounds like a great idea and would educate people about vascular birthmarks and the impact that they can have on the people with them.

8) What are your hopes for the future of AVM/VM research?

I'm hoping that one day in the future someone can find a way to cure AVMs/VMs that works for every person who has one.

9) What has been the biggest lesson you've learned throughout your journey thus far?

I have learned to never judge anyone by their appearance and also to be kind to people at all times, as you never know what someone is going through on the inside.

10) What is your proudest accomplishment?

I'd say that my proudest accomplishment is overcoming years of adversity and coming through the other side of it a lot happier.

HEIKE'S STORY

Heike's Story

2016 has been full of unexpected turns. It brought a fair share of challenges to many but blessings still abound. The past few years for me personally have been a whirlwind - overcoming health challenges, welcoming professional advancement, and sustaining personal growth. I have an unyielding resilience that I refuse to surrender, and I know that I am not alone. I find comfort in knowing that I stand beside, and on the shoulders of, so many who face seemingly impossible circumstances, pain and prodding, setbacks and complications, yet maintain the will to live another day. As we learn from Heike "In Her Own Words," no matter our challenges or disappointments, there is always a good reason to keep fighting. Our ability to hope becomes our will to live, and our collective will sounds the siren call for a humanity that refuses to die for illness sake. With each breath we pull,  mankind pushes forward, refusing to be silenced. As we close out 2016, let's resolve to maintain a spirit of hope, peace, and fortitude no matter what this upcoming year may bring. 

Happy Holidays!

Hometown: Bochum, North Rhine-Westphalia, Germany

When I was younger, I wanted to be: A veterinary nurse

In 10 years, I will have: I live in the here and now and don't think about what's in 10 years. I have to thank my AVM…

My life long goal is to: The goal of my life is to spend a long and good life with my family.

If I could change one thing about the world, I would: For me, it is important that we understand other people as individuals, accept their strengths and weaknesses as they are.

My favorite quote/scripture/affirmation statement is: In the morning, you are welcome is my motto in life (English Translation). It means that I love my life even with all the problems an AVM creates. I love my life along side all the people who don't know what real problems are, how it is to be sick or be made fun of. It means that every day is a good day because I'm alive, and when I go to bed every night, I'm happy because I've won the fight against the AVM, not my personal war but the one fight.

1) Describe the type of AVM you have? What was the first sign?

In1986, at the age of 11 years, I had severe pain in my right shoulder for no apparent reason.

2) How did you eventually come to receive treatment?

The diagnosis in 1996 was an AVM in right shoulder.

3) Who are/were your main doctors, where are/were you treated and how has your care been?

Over the last 20 years, there have been so many different doctors - diagnostic radiologists, orthopedists, neurologists, surgeons and angiologists.

4) How do you feel your health will progress in the future?

I hope that my AVM remains stable and no longer grows above all that it is not ruptured.

5) How has having an AVM changed or impacted your life?

The disease determines my life... Things like to horse ride or roller coaster ride are taboo for me.

6) What has been your biggest challenge in the battle with AVM?

For me, it would be important to make people realize that I am seriously ill, even if you don't immediately see it. I fight every day to be normal and live my life.

7) What do you think a documentary about those surviving AVM can achieve?

It would be great to make it clear to people that we have a disease just is like AIDS, Cancer, ALS and Multiple Sclerosis. Our disease is not necessarily fatal but just as mean and sneaky as the others.

8) What are your hopes for the future of AVM research?

Safe treatment methods for us as patients who are crowned by success.

9) What has been the biggest lesson you've learned throughout your journey thus far?

To take life as it is with all its small inconveniences, to enjoy every day, to feel human.

10) What is your proudest accomplishment?

My personal greatest achievement was in 2011 as I brought a little healthy son into the world who today is my pride.

DR. CHELSEY SMITH'S STORY: Q & A #1

Dr. Chelsey Smith's Story
aka Our 1st Q&A

Sitting at my laptop in our darkened hotel suite the night before the 40th (+) procedure in a lifelong battle with Arteriovenous Malformation. Both my parents are asleep, only the computer's screen glow and faint fan noises to keep me company. Before turning to focus on finishing my cheesecake and soda before the clock strikes 12 AM, I've been in a bit of reflection. My mind has been on all of the recent news effects that has challenged us as a country here in the US and as a global community - the bus crash in Chattanooga that took the lives of six precious children, the plane crash in Columbia that resulted in the deaths of 71 beloved souls, and the wildfires in Gatlinburg which not only took lives but engulfed a cherished city in flames.

Left in the ashes of the East Tennessee destruction was pieces of a Bible page. One readable verse was the following from Joel chapter 1: "O LORD, to thee will I cry: for the fire hath devoured the pastures of the wilderness, and the flame hath burned all the trees of the field."

I am learning to appreciate the blessing of a God who does not exist on our terms but rather welcomes us to lay life's burdens at his feet, to be the first place we turn in times of distress, the one consistent source of peace beyond what our human minds deem possible. The fires will undoubtedly come. Evidence of God's presence will always be right there in the embers, a remnant of hope.

One (albeit material) source of hope for me and others has come in the form of a new doctor at the University of Arkansas for Medical Sciences. My doctor of 18 years, Dr. James Suen, is training her to slowly but surely take the reigns of his practice one day. I am encouraged by her presence, her enthusiasm, and her commitment to quality care for AVM patients and a cure in our lifetime. Click below to hear from Dr. Smith In Her Own Words, the first video Q & A to be featured so far!

HIRO'S STORY

Hiro's Story

As I sit in the coffee shop, my iced Matcha green tea latte collects condensation, the sounds of the espresso machine and the chatter of other patrons fade into the background. I’m too deep in my own thoughts. Hiro has moved me there. Her words about her own life beg for introspection. As I struggle to keep tears at bay, the daylight comes through the window and kisses my cheeks. I am filled with warmth.

This past month has been one of soul searching for me. I have experienced many indicators that living life selfishly, about my own wants and likes, my own personal passions, is not enough. To whom much is given, much is required (Luke 12:48). And I realize that for all I’ve been given – namely, an unyielding zest for life and an unshakable faith in the midst of medical turmoil – I have not paid enough forward. I have moved forward, over each hurdle, sidestepping any deterrent. Southern, facially deformed, girl making it in this big city of Angels (LA). And yet, that in itself, does not fulfill.

What does then? As Hiro will share with us, it is our adamancy that our lives are not bound up in the inconsequential aspects of life nor found on the mountain tops of material success. To paraphrase a speaker I heard recently, it is in the valleys that life is really lived. We should be encouraged not to run from those seasons in the trenches. As Hiro will show us, we can emerge grateful for the struggle and refocused on how we can use all that we have become for the benefit of others.

Hometown: Maryland

When I was younger, I wanted to be: Teacher

In 10 years, I will have: Found a way to integrate my background in Special Education, interests in Disability Advocacy, and career in Technology to find a field for myself that I can invest my life in pursuing (possibly in the field of assistive technology).

My life long goal is to: Work in disability advocacy to provide support and resources for families and individuals to thrive in their differences.

If I could change one thing about the world, I would: Provide education for all children.

My favorite quote/scripture/affirmation statement is: “We delight in the beauty of the butterfly, but rarely admit the changes it has gone through to achieve that beauty.” - Maya Angelou

1) Describe the type of AVM you have? 

What was the first sign? I had 3 cerebral AVMs in my left frontal lobe, with the first sign being a tonic clonic seizure (I had 2 more in the span of half a year after that) when I was 21, and a senior in college.

2) How did you eventually come to receive treatment? 

I was diagnosed after 3 months and half a dozen different types of scans. My neurologist recommended a neurosurgeon at Johns Hopkins, and I was fortunate enough to get an appointment in the follow months with him to discuss treatment options. We decided on crainotomy.

3) Who are/were your main doctors, where are/were you treated and how has your care been? 

Dr. Alessandro Olivi at Johns Hopkins Hospital. The surgery itself was phenomenal. However, we were not prepared nor informed about any of the side effects/recovery timelines/events that came with having a craniotomy, and had to find everything out ourselves, generally after a lot of pain and confusion.

4) How do you feel your health will progress in the future? 

I have been going to the gym and running since this January, and by July, had successfully lost 20lbs I had put on since taking an office job. Since spring, I have been running many races, and hope to continue learning to be healthy and take care of myself to reach optimum health for my brain and body.

5) How has having an AVM changed or impacted your life? 

Having an AVM has thrown a completely life-altering curve-ball into my life. It is strange to say, but I am thankful for it in many ways, as it has allowed me to reevaluate my life and what is really important, while what superfluous things are not. In this age of fast-paced, workaholic society, it is often difficult to disengage and really assess what is important in life (family, friends, quality time spent doing activities with loved ones) as opposed to things that may seem important, but once you look back on your life, would not have missed. I am able to appreciate the “small things” in life that seem very insignificant, and for that, I am thankful, as I am fully aware of how close I was to losing everything.

6) What has been your biggest challenge in the battle with AVM? 

Finding information, resources, and support for survivors before, during, and after treatment. My family and I basically went through the journey blind-folded, and I wish it could have been made easier with guidance, either by medical professionals or by peers and other survivors. For this reason, I have founded Burgundy for Life (http://burgundyforlife.org http://fb.com/avmalformation) in order to spread information, provide/create resources, and facilitate support group environments for survivors and their families, which are all things I wish I had when we were going through the journey.

7) What do you think a documentary about those surviving AVM can achieve? 

Given majority of the population still has no idea what a vascular malformation even is, quite a lot! Many of the doctors I have spoken to were not familiar with AVMs, and so clearly there is a lot of publicity that is lacking for this disorder.

8) What are your hopes for the future of AVM research? 

For less invasive treatment methods that could work for many of the “inoperable” or “incurable” AVMs present today.

9) What has been the biggest lesson you've learned throughout your journey thus far?  

There is not one path through life; it’s going to take you through very dark and strange backroads and small paths that you aren’t even sure are actually paths, but in the end, you are going to come out stronger, better, and a more fulfilled person.

10) What is your proudest accomplishment?  

Graduating a year and a half after my craniotomy with my B.S. in Special Education, and then the year after that with my M.Ed. in Special Education, and then moving to New York City and establishing my ability to live and work independently. Many people were adamant that I will never be able to work full time or achieve independence (ie: move away from my parents), so I felt that I needed to do something drastic to prove to myself that I can do whatever I set my mind to. Now I work as an IT Support Analyst in NYC, training for my first half marathon in 2017.

Check out a timeline/photographic essay of the past 4 years of Hiro's journey here: http://twistedpaths.org/brain-surgery-journey/

LOVISA'S STORY

Lovisa's Story

The morning of every surgery I had growing up, I would walk down a chilly breezeway, windowed on both sides, that connected the parking lot to the hospital. I would push through the heavy revolving door, and right in the entryway, in gray marble with tan and silver specs, was a quote by poet Edwin Markham. It rings more and more true as time goes on.

“There is a destiny that makes us brothers; None goes his way alone. All that we send into the lives of others comes back into our own.” For those of us affected by vascular malformations, by disease, by medical trauma, we all have a shared path that binds us closer together with each step we take toward our life’s purpose.

This came to me as I connected with Lovisa through our shared AVM community online and became more curious about her journey. As you read her story, in her own words, remember that although we may never meet face to face, hail from varied backgrounds, and have a range of opinions and views, we are all here - in this time of health innovation, connectivity, and progress – together. As we push forward and grasp the hands of those walking beside us, we pour into into each others lives the very things we need to survive – faith, hope, fortitude and love. What we provide to others by being vulnerable enough to share our stories and brave enough to thrive despite the odds, we also receive in return. The greatest of these is right in her name - Love-isa.

Hometown: Falun, Sweden

When I was younger, I wanted to be: A mermaid!

In 10 years, I will have: A job that I am happy with and way too many pets

My life long goal is to be: 100% comfortable in my own skin

If I could change one thing about the world, I would: Give women everywhere exactly the same rights and possibilities as men

My favorite quote/scripture/affirmation statement is: 'My illness has shaped me, but it does not define me.'

1) Describe the type of AVM you have? What was the first sign? 

High flow AVM in my left cheek and lower lip. My mother first noticed discoloration around my mouth when I was about nine years old, and soon after, my lip started swelling. I finally met a doctor who gave me my diagnosis when I was 11 years old.

2) How did you eventually come to receive treatment? 

First my doctors here in Falun was convinced that I had an inflamed salivary gland in my lower lip, and they were planning to cut my lip open and drain it. Luckily my parents weren't so sure about letting someone just cut blindly in to their daughters face and demanded that I got to meet a specialist in another town and that saved my life. I later met a surgeon in Uppsala, Sweden, and he quickly discovered what was wrong, and that I actually could have bled to death if my parents didn't prevent them from cutting open my lip.

3) Who are/were your main doctors? Where are/were you treated and how has your care been? 

I've had the same doctor, Dr. Pär Gerwins at Uppsala University Hospital in Uppsala, Sweden, since I was 16.

4) How do you feel your health will progress in the future? 

My AVM has been very aggressive the last few years, and even though I've been treated with several embolizations since 2013, there's really not much of an improvement right now. But my doctor is actually meeting with Dr Waner in October to discuss surgery to remove parts of the AVM, so hopefully I'll see some big changes soon. My dream is to be totally pain free one day.

5) How has having an AVM changed or impacted your life? 

Oh my god! In every way possible. I've been bullied and harassed because of me looking different. I've been struggling with depression and anxiety, and it's been really hard at times. Being a teenager with a malformed face, severe bleeding and extreme pain was not ideal to say the least. But through this I've realized that beauty really IS in the eye of the beholder, and nowadays I only surround myself with people who see past my AVM and love me for who I am.

6) What has been your biggest challenge in the battle with AVM? 

Trying to accept the fact that I don't look "normal" and maybe never will.

7) What do you think a documentary about those surviving AVM can achieve? 

Being able to inform people about this unknown illness is extremely important, and I think that a documentary is the perfect form of media for that. I would love for more people to get to know that AVM exist.

8) What are your hopes for the future of AVM research? 

In an ideal future, there will be a cure one day and of course that is what I hope for.
 
9) What has been the biggest lesson you've learned throughout your journey thus far? 

That I'm not my illness. I have AVM, but it's not who I am. I am a singer, a video game addict, someone's girlfriend, a feminist, a pet owner, who just happens to also have an AVM. And that's important to remember.

10) What is your proudest accomplishment? 

Surviving. When I was the most depressed, I was convinced that I wouldn't survive past my 18th birthday. But one day, I realized that I could either let the AVM consume not just my face, but also my whole life, or I could stop battling my illness and try to learn to live with it instead. And last week I turned 26. Every day is overtime right now, and even though some days still are super hard to get through, I appreciate every moment.