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.