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.

JANE'S STORY

Jane's Story

A woman after my own heart, as I unraveled the seams of Jane's abounding prose, her genuineness and her assuredness grabbed me and wouldn't let go. I found myself saying "Amen!" in my head (and a few times out loud) as her wisdom and spirituality gratified something deep within aching for confirmation. When I came across Jane on the AVM Survivors site, I could tell she would provide a perspective much needed. But she's exceeded any expectations I may have unconsciously held. I am moved by Jane's ability to shed any vulnerability and tailor a version of her story that is as humble as it is heroic. Go to a quiet place, take a deep breath, and prepare to be taken a little higher...


Hometown: Perth, Australia

When I was younger, I wanted to be: An air stewardess :P

In 10 years, I will have: a family who loves and serves the Lord (God willing).

My life long goal is to: Romans 12:12 sums it up pretty well: “Be joyful in hope, patient in affliction, faithful in prayer.” I think, practically, I want to try to live simply but passionately, and be hospitable with my resources. To keep growing in Christ, serving Him, and learn to be content in the Lord in every season & circumstance of my life.

If I could change one thing about the world, I would: Eradicate violence and loneliness, and promote hope. Give every child a safe and loving home to grow up in that provides for their physical, emotional and spiritual needs... Sorry that’s a lot more than one thing!

My favorite quote/scripture/affirmation statement is: I have so many as they helped me through the AVM journey so much.

• Romans 8:28 And we know that in all things God works for the good of those who love him, who have been called according to his purpose.

• Psalm 91 Whoever dwells in the shelter of the Most High will rest in the shadow of the Almighty. I will say of the Lord, “He is my refuge and my fortress, my God, in whom I trust.” Surely he will save you from the fowler’s snare and from the deadly pestilence. He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart. You will not fear the terror of night, nor the arrow that flies by day, nor the pestilence that stalks in the darkness, nor the plague that destroys at midday.

• Always be kind, for everyone is fighting a hard battle. Plato 

• Anxiety does not empty tomorrow of its sorrows, but only empties today of its strength. Charles Spurgeon 

• 2 Corinthians 12:9 But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.

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

High flow AVM in the right masseter muscle in my cheek. First sign was swelling of the cheek.

2) How did you eventually come to receive treatment? 

It was a long journey seeing various doctors and specialists around Australia and overseas, and getting conflicting advice. I did a lot of research online myself with the support of my parents and friends, asked and learned from the experiences of many other AVM patients on the AVM survivors website and Facebook page. It was a very difficult decision whether to treat, or to wait and monitor, as nothing was black and white with AVMs, and there are so many uncertain factors and risks on both sides of the coin. But eventually after much consideration of the facts and prayer, and under the trusty advice of Dr. Suen who thought I had a good chance of completely eradicating the AVM, I decided to give it a shot at been AVM free.

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

Dr Suen in Little Rock, Arkansas U.S. performed a major resection of my AVM in 2014. Words cannot express how thankful I am for him. His professional skills and experience with AVM is outstanding, his patient care and follow up always exceeds expectations. Even though I am now seeing Dr. Wayne Yakes in Denver, Colorado U.S. for ethanol embolisations, Dr. Suen continues to follow me up and review my scans. Dr. Yakes is also without a doubt very skilled at alcohol embolisations for AVMs. I have had 2 very successful treatments by him. I have also seen doctors in China for embolisations prior to seeing Dr. Suen and Dr.Yakes. There was also Dr. Kenneth Thomson from Melbourne, Australia, who was very professional and kind. He helped me a great deal in explaining what an AVM is and provided free advice via email and reviewed my scans.

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

Having had quite a few embolisations and surgery, and sometimes avoidance of activities/exercises that can worsen my AVM symptoms, meant that I don’t have the same physical health and stamina that I used to. But I’m very thankful and positive that it will return to normal eventually. My last embolisation went well, and the report says that I’m possibly at end of treatment! Though I will still have to get another angiogram in November to check for any regrowth, I am trying to maintain a steady mindset that whatever my next scan result will be, it’s in God’s hands. Dance was one of my passions, and I had to stop dancing for awhile because of AVM symptoms and the medical treatments associated with it. But I’m now back into dance and preparing for our end of year concert :)

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

It has been a difficult journey with many tears, anxiety, frustrations, disappointments and uncertainties. Much time, energy and money has been swallowed up by the disease itself and related medical scans and treatments, especially the ones requiring me to travel overseas. However, I feel like I’m a much more enriched person because of the AVM. It has changed my perspective on life, faith, everything. I have become more positive and an optimist. I met some really amazingly brave and strong men, women and children who are battling the disease themselves or caring for someone who is. Their experiences, attitudes, advice and help have impacted me in more ways than they will ever know. I now have a unique story to share that may help encourage others. Most importantly, my faith in God has soared. Having an AVM made me question and struggle with my faith in God, as a result my faith has been stretched and solidified. God has shown me so much more of Himself and His character, of myself and my character and purpose, and a deeper understanding of the scriptures. Eg. how God work all things (even the bad things) for the good to make us more like Jesus; why someone so weak like me would have a disease like AVM – so that His power can be made perfect in weakness; how no king is saved by the size of his army and no warrior escapes by his great strength, but it is the Lord who delivers.

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

Emotional stress and anxiety over whether the AVM was growing or going to bleed. Loneliness and isolation: friends, family, and work colleagues who mean well but just don’t know how to respond or relate to your illness/situation because it’s such a rare and invisible disease. Also sifting through the conflicting and contradicting advice from different doctors, some whom really didn’t want to know about your condition, and some who can come across insensitive. I was told by a specialist I was going to die on the table if I had ethanol embolisation, and that no doctor would perform surgery on me as it would mutilate my face. I was also told by another specialist that my AVM was only a nuisance to myself because it’s not like it has popped out of my face and is squirting blood everywhere.

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

I think it would be a valuable source of information, hope and encouragement to patients. It would also raise greater awareness and understanding of the disease in the public as well as the health professional sector. I hope it will encourage medical professionals around the world to be more proactive in AVM research and treatment, so more resources and safer and effective treatment options can be accessible to patients no matter which part of the world they live in.

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

I hope for a cure and less invasive treatments and number of treatments needed. And also increased resources, education and understanding of AVM amongst medical professionals.

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

There are so many as mentioned in answers to previous questions. Probably that God really does have a good plan in every season of your life which can be lived with purpose and hope.

10) What is your proudest accomplishment?

Not to live for a cure but simply to live. I’m making the most out of my medical trips to U.S. Instead of dreading them, I try to get excited about them. Every time I go, God works little miracles here and there, places new wonderful inspirational people in my life, and shows me that I can live purposefully and bless others despite what my circumstances look like.

BIANCA'S STORY

Bianca's Story

It's funny how God allows life to bring people together in as many ways as there are rays of sun. When you look at it straight on, it's hard to see clearly, the brightness blurring the view. But with some perspective, like a step back or protectant from the glare, we can appreciate the beauty, stars of hot plasma become young women set ablaze. In addition to the work I've been doing with TheAVMProject and More Than Skin Deep, I've run my nonprofit Jaz's Jammies, which collects new pajamas for children in hospitals and homeless shelters, for the past ten years. One of the most fulfilling partnerships to date has been with Whitehaven High School in Memphis, Tenn. Those kids seem young, but their ability to empathize with others enduring hardship and put forth real effort to lighten the others load, is an inspiring sight to witness. For us, this meant teenagers, with busying school work and bubbling personal lives, spending weeks collecting new pajamas, and then presenting hundreds of pairs to our organization during a morning assembly celebration.

It was in the midst of these festivities that a teacher first mentioned Bianca, a young African-American girl like me who also had an AVM. After connecting and exchanging text messages for four (yes, four!) years, we finally met. Over deep dish pizza, in a small Mississippi town outside our city, she shared her story with me. With a temperament somewhere between indomitable and sanguine, she detailed key events in her journey, from her first AVM scare - swimming with friends and family on a warm summer day, feeling dizzy with a panging headache, and then passing out - to her road to recovery post diagnosis - hours and hours of rehab, isolation, and reintroduction to daily life, not worse, but definitely different from before. I am so proud of Bianca's strength and fortitude. Her quiet confidence gives me courage to be as self-assured and secure. Hear from Bianca in her own words...

Hometown: Memphis TN

When I was younger, I wanted to be: a model

In 10 years, I will have: a successful career, a big house, and a family

My life long goal is to: be successful

If I could change one thing about the world, I would: change people's attitudes

My favorite quote/scripture/affirmation statement is: Treat people how you want to be treated.

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

I had a headache.

2) How did you eventually come to receive treatment? 

Blood vessels ruptured, and I had a stroke.

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

Dr. Hewitt & Dr. Muhlbauer . I was treated at Le Bonheur Children's Hospital, and the care has been great.

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

I feel it will be the same but with improvements in mobility.

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

It helped me to see things in a different view point, and I learned how strong I really am.

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

learning to do everything over again.

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

I think it will raise more awareness about AVM.

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

an easier way to detect early signs

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

to never take anything for granted.

10) What is your proudest accomplishment? 

Being a student at Anthem Career College in Memphis.

EDDIE'S STORY

Eddie's Story

 

In the annals of my mind, there are memories of me and my father that are frozen in time like still images, stamped with an emotion instead of a date and time. Although they cover the years before he realized our lives would change forever because of my rare birth defect, some of the more poignant recollections correlate with the most traumatic moments of this journey. Leaving the local hospital after doctors said they were troubled by the prospect of trying to treat me. *Click* Lying flat on my dad's side of my parents bed as my face was racked with pain *Click* In the back of his SUV as he floored it two hours from Tennessee to Arkansas after recovery from a procedure went awry. *Click*

Still, there are other pictures, painted in vivid colors and shaded in pillowy soft light. His face each of the nearly 40 times I've awakened in a post surgery haze, anesthesia's magic refusing the quell of midnight. *Click* Falling asleep to the hum and bum of his SUV rolling over the interstate back towards home. *Click* No oozy, creepy healing process faced alone, dad's hands and heart always big enough to alleviate the unpleasant. *Click*

In this very special Father's Day edition, I present my Daddy in his own words...


Hometown: Jackson, TN

When my child was born, I thought: She is the most beautiful baby in the world.

As a parent, I’ve advocated for my child’s health by: Gaining knowledge through internet searches, reading books, asking questions of the doctors and actually providing care based on instructions from the doctors.

In 10 years, I will have: Witnessed not only a cure for AVM but a way of diagnosing AVM sooner in life.

If I could change one thing about the world, I would: Have people love others for their character and what's on the inside of a person versus what's on the outside.

My favorite quote/scripture/affirmation statement is: The one who does not love does not know God, for God is love. 1 John 4:8

1) Describe the type of medical challenge of the person for which you give care? What was the first sign? 

She has an AVM. It’s not a typical case where it’s specific to a nidus area but diffuse and extensive. After the initial surgeries, the condition returned and grew even faster after each surgery.

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

After continuing to research her condition with early experiences of internet searching, we located a specialist in Little Rock, AR. After seeing the before and after pictures, we made an appointment. That was the first time we saw anything similar to what was happening to her.

3) Who has been his/her main doctor(s), where has he/she been treated, and how has the care been? 

Dr. Waner and Dr. Suen have been her main doctors. She's been treated at the Arkansas Children’s Hospital and UAMS. The care has been outstanding. Dr. Suen and Dr. Waner have been God-sends. The love and care they show to their patients has been outstanding.

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

I feel within the next five years, there will be a treatment for AVM patients other than tissue removal through some type of drug treatment as well as some way to diagnose AVM sooner.

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

It has made me selfless. Her having the condition and the way she has decided to live her life has been an example. She has encouraged others to take whatever conditions God has put you in and use them to be an example for someone else.

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

Not being able to do more to take away the pain and the hurt that she goes through.

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

I think it cam provide visibility to the condition to a greater number of people and give those people a glimpse into how it is to walk in the shoes of someone with that condition. It can show how, even though you see the abnormality, the inside of the person is striving to be seen the same as anyone else. It can also be an avenue for other AVM patients and their families to see that they are not the only ones with the condition and find comfort in reaching out to other families.

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

Within the next five years - to find a treatment option other than surgeries, to remove AVM through drug treatment, and find a way for early diagnosis, if it's some type of blood test or scan.

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

God is still in control and puts us in situations that allow us to show our faith in him and strength our love for one another. It’s up to us to take that lesson and apply it to our lives.

10) What is your proudest moment in this journey? 

Jaz has not allowed her AVMs and all the trials and tribulations associated with them to waiver her faith in God or lessen her love for her family.

JANICE'S STORY

Janice's Story

My mother's story is so much more than her ups and downs dealing with a child fighting a rare birth defect. She, the middle of three children, born and raised in a small but bustling city in Tennessee by a single parent is, among other attributes, a successful businesswoman, a staunch supporter of community service, a breast cancer survivor, a dedicated wife, and yes, a proud mother of two. Yet, for the past twenty-seven years (as long as I've been alive), her story has involuntarily been fastened to this scary, unpredictable anomaly called AVM and connected to the journeys of parents all around the world advocating for their ill children. My saving grace as an AVM survivor, aside from divine providence, has been the support of my family and particularly the love of my mother. Abraham Lincoln once proclaimed, " I remember my mother’s prayers, and they have always followed me. They have clung to me all my life." Ain't it the truth. Read below for my mother's perspective on this journey.

Hometown: Jackson, TN

When my child was born, I thought (about her condition): She has a birthmark on her face.

As a parent, I’ve advocated for my child’s health by: Gaining as much knowledge as I can online, talking with the doctor, reading about other parents and their journey with AVM, and assisting Jaz in her quest for knowledge.

In 10 years, I will have: I hope to have a better sign of reassurance that we’ve come to the conclusion of surgeries and problems as it relates to AVM, that there will be a cure. I hope Jaz will be done with surgeries, and she will be restored and that a cure will be found so that others won’t have to endure what she’s endured.

If I could change one thing about the world, I would: Make people more accepting of individuals with abnormalities

My favorite quote/scripture/affirmation statement is: God has not given us a spirit of fear but of power and of love and a sound mind. 2 Tim. 1:7

1) Describe the medical illness of the person for which you give care? 

What was the first sign? She has an AVM. When she was born, her tongue was enlarged. As a baby, she could not keep formula down and had reoccurring mouth infections. We always had to keep a towel around her neck. The formula would just roll back out. That was the first challenge.

2) How did she eventually come to receive treatment? 

It was the age of the Internet. It was just getting popular. We had gone to a plastic surgeon and had two surgeries on her lip which was also enlarged. The doctors would reduce the lip, but after a few weeks of healing, it would be bigger than it was before. One night, her dad and I were talking. We googled "Hemangioma" and Dr. Waner's name popped up with testimonials from parents who had all been told they had a hemangioma but were misdiagnosed. They even had before and after pictures online. Then we saw he was only two hours away. It wasn’t referrals. We credit the age of the internet.

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

We started with Dr. Waner then transitioned to Dr. Suen upon Dr. Waner's recommendation. We received excellent care from both doctors. They are competent, they are great with her as far as bedside manner, and informative as far as giving her information.

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

I hope, after 30 plus surgeries, that in the next couple years we’ll be done. I hope that the AVMs will no longer be affecting her and that she will be cured, happy and whole.

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

Caring for someone with a medical challenge causes one to be hopeful but fearful sometimes, cautious but optimistic. And you’re also very protective, sometimes overly protective.

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

Maintaining a sense of family normalcy as it relates to the spouse, siblings. For example, when we think about simple stuff like taking a vacation or family photos, and she is healing from a procedure and bandaged up. At times, we would think, "we can’t do this because we have to go to Little Rock, we can’t do this because Jasmine’s surgery is scheduled here."

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

It will give the individual with a challenge hope that anything is possible. It will give the family members and caretakers courage to withstand the demands of the health issues. And it will give onlookers a glimpse into the life of someone with a health challenge and how they overcome it.

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

My hope is that her current doctor, Dr. Suen, and other AVM doctors, will be able to pass along all the knowledge, expertise and training they have to new and upcoming doctors, so they can continue the quest to find a cure.

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

Things will happen in their own time. It’s not our will, but it’s God’s will, and we have to let his will be done.

10) What is your proudest moment in this journey? 

My proudest moment is seeing her reach milestones in spite of - graduating from college, attending Syracuse for her master, going to New York on an internship and moving to LA in spite of - to make all of her dreams a reality.