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.