Oleksandra: Junctional

The Story of Oleksandra

Maybe someone out there will find this story worth reading.
There is nothing here to complain about, and nothing to boast about either…

This is simply how fate unfolded.

It is the path of my daughter --
A little girl who wants to live,
Who wants to be healthy,
Who dreams that one day she too will become a mother,
And give birth to a healthy little girl of her own. 

Hello, my name is Kateryna. We are a family from Ukraine. In the beautiful city of Kharkiv, I gave birth to two children — my son Roman and my daughter Oleksandra (Sasha). When Sasha was born in 2020, my world turned upside down, and nothing would ever be the same again…

Sasha was born with butterfly disease — Epidermolysis Bullosa (EB). She was missing several fingernails, and had a few blisters on her body and inside her mouth. The doctors at the maternity hospital couldn’t determine what it was. So they started intensive treatment for an unknown infection… It was a real nightmare.

My precious little daughter was tortured every single day for two months. How she survived all of that — I still don’t know. They kept pumping her with liters of antibiotics, inserting IVs, and fixing everything with regular adhesive tape — which they then ripped off along with her skin!

They undressed her and laid her on a heated bed, and right in front of my eyes, the skin on her buttocks curled up into rolls. Her beautiful little bottom turned into two bloody pieces of raw flesh. My heart was breaking. I was devastated. Groups of doctors came through our hospital room, each offering their own diagnosis. Eventually, I couldn’t take it anymore. I took Sasha home, despite the doctors’ threats. I realized that if we didn’t leave right then, they were going to kill my child.​

We came home broken and exhausted… I was heartbroken, and Sasha was covered in huge wounds all over her body. From the very first moments of her life, my tiny baby endured unimaginable pain — all because of the doctors’ ignorance. Our fight for life began at home. But I was relieved that no one else could hurt my daughter anymore. I started looking for information everywhere. Eventually, I came across a condition called Epidermolysis Bullosa. It’s incurable. A genetic defect. The skin is incredibly fragile and delicate — both inside and out. It affects the entire body and requires special care, including non-stick dressings. 

On the internet, I found the contacts for DEBRA Ukraine, and also discovered a specialized EB unit in Kyiv. Finally, things started to make sense. We received proper wound dressings. I was taught how to care for her skin. And my little princess finally began receiving the care she truly needed. Of course, I could no longer sleep. My life turned into a never-ending cycle of dressing changes, pain relief, and feeding. In the early mornings, I would go on Facebook and connect with people from all over the world who lived with this condition, trying to learn as much as possible to help Sasha — and to share advice with other mothers. That’s how I met Karen — a wonderful mother of Dylan, who sadly passed away as a baby.

Unfortunately, the wounds Sasha received in the hospital never healed. Even now, five years later, we continue doing endless dressings that remind us of those terrifying times. And all of this horror took place during the COVID pandemic, with all its lockdowns… Sasha has lost every single fingernail — and in their place, there are still open, bloody wounds. But the most excruciating pain she experiences comes from the wounds in her eyes. It is, perhaps, the worst pain imaginable. There are times when Sasha cannot open her eyes for months. And yet, with her incredible will to live, her strength, and her stubborn determination — she overcomes every obstacle. She eagerly soaks up every bit of beauty the world has to offer.

​She is overjoyed when she can see flowers, birds, and trees.

She rejoices when she can run and jump.

She is happy when she can enjoy food without pain.

She smiles when she is able to sing — although she often loses her voice.

And she dances beautifully.

But when we finally managed to do a genetic test, I was hit with yet another devastating blow… They told me that Sasha has Junctional Epidermolysis Bullosa – severe, and that with this diagnosis, most children do not live long… I had to face this unbearable news. But I did. I survived it. No one knows how much time they have. No one can see what lies ahead…

Then one morning, I woke up to the sound of explosions. It was February 2022. The war had begun. Our city is close to the border, and the raging Russian army was turning everything in its path into hell. Missiles and bombs were flying non-stop. Everything exploded around us. We kept running to the basement to try to survive. It was winter. Freezing cold. No electricity. A dirty, dusty basement. I had to blend food for Sasha, change her dressings… but there was nowhere to cook, no way to prepare anything…
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Everything around us was shaking and exploding. Buildings were burning… Occasionally, when we had some signal, I would read messages — written by people I had never met, from EB communities in the USA, the UK, and Europe. These were women, mothers of butterfly children, and adult butterflies themselves from social media. They were asking how I was, how the children were… if we were still alive. My children! My beloved children!

I looked at them and I knew — they would never forgive me… I would never forgive myself… God would not forgive me — if I didn’t save them.
I had to do it! I had to get them out! But how?! How do I get to the train station? How do I get on a train? How do I cross all of Ukraine — over 1,000 kilometers?!

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DEBRA Ukraine reached out and offered us a helping hand. They found a volunteer who took us to the train station. The station was completely overwhelmed — a terrifying crowd! Hundreds of thousands of people! Only one train was expected that day. We stood on the platform for six hours. It was unbearably cold. Eventually, the train arrived — and chaos broke out.
The entire crowd surged toward the train. Inside, it was so cramped, there wasn’t a single inch of space to move. We had a 24-hour journey ahead of us to Lviv. It was suffocating, unbearably hot, and impossible to get to the toilet. Sasha was in my arms, sweat rolling down her face, struggling to breathe.

My brave son — a true little man. He was 10 years old at the time. He didn’t shed a single tear. He supported me and encouraged me the entire time. I didn’t know if we would make it. Some people were fainting — some even died right there on the train. 

Eventually, we reached Lviv and got on a bus to Poland. Of course, the situation at the border was just as difficult. We waited 12 hours on the bus, then got off and continued on foot. At the border, we were picked up by some Polish volunteers and taken to a refugee shelter. From there, we were taken in by Fundacja “Stella” im. Agaty Orłowskiej — an incredible foundation. We were welcomed by an amazing woman named Monika, who also lives with Epidermolysis Bullosa. During the war, she opened her heart and her home to many Ukrainian butterfly families. She gave us shelter and support when we had nowhere else to go.

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Of course, Sasha’s skin and wounds were in terrible condition. But under the protection and care of Ms. Monika, Sasha finally received the proper dressings, specialized nutrition, and medical assistance she so desperately needed. She also began attending sessions at the rehabilitation centre run by the Stella Foundation, which played a huge role in improving her health and strength.

With time, through Facebook groups, I received a message from Lucretia, a wonderful woman from Florida who also lives with EB. She told me about a woman in the UK — a mother of a girl with dystrophic EB — who was willing to help a Ukrainian family affected by both war and Epidermolysis Bullosa. She offered to give us a home and the chance to be under the care of an experienced EB medical team. That incredible woman is Anna, and her beautiful daughter is Jasmine. Anna truly understands this pain — she lives it every day, fighting for her daughter’s life. And her heart was big enough to make space for us too.

I knew I couldn’t just move to any country — for Sasha, access to special dressings is a matter of life and death. These dressings are her second skin. Without them, it would be a catastrophe. She also needs access to professional EB specialists — something not available in many countries. DEBRA UK, especially Rowena, supported us from the very beginning — even during the first days of the war. She stayed in touch, guiding us through this unimaginable journey.

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Now, our family is here in the United Kingdom.
My children are safe.

But our future… remains uncertain, lost in the fog. Our home still lies under enemy fire… Where fate will take us tomorrow — no one knows.

I don’t know what our lives would be like without Sasha.
But she is our guardian angel --
And she belongs to the army of butterfly people --
People who, through their pain and wounds, are saving lives all around the world.
Saving one another.

One big family.

These are people who constantly need help because of their condition --
Yet they give so much more in return. They are so much stronger than ordinary people.

But every day, I still pray to God for healing 
And I hold on to hope --
Hope for new research,
Hope for a breakthrough,
Hope that one day, a real cure for Epidermolysis Bullosa will be found.