Kateryna’s story
In 2022, me and my family were fighting two wars: one in our homeland of Ukraine, and one against epidermolysis bullosa (EB). Both were wars we did not ask for, and ones we never wanted to fight in.
We have been fighting EB since my daughter Sasha was born in 2020. She has Junctional EB (JEB) and her skin is as fragile as a butterfly’s wing. The slightest touch or friction can cause her skin to blister, leaving incredibly painful open wounds.
When war first broke out in Ukraine, we fled the country with my father, my partner and son, Roman. We left our home, our country, our lives. I was terrified, but we had no choice. We were in a bunker when I was first contacted by DEBRA UK, who worked closely with other organisations to get us to Poland. Once we arrived, we met an EB family who took us in and gave us the bandages we desperately needed for Sasha’s blisters.
Before this nightmare began, I connected with fellow EB parents on social media. This was where I would meet Karen, who helped transform our lives.
Tragically, Karen lost her son Dylan to JEB when he was just three months and one day old – this is the same severe form of EB that Sasha has. Dylan is sadly no longer with us, but his light helped guide us to safety.
Karen introduced us to our DEBRA EB Community Support Manager, Rowena. She is one of the greatest gifts my family has ever received – she is a lifesaver. Rowena has helped us in endless ways. She does more than help solve practical problems, she provides emotional support and comfort. I have always felt that it is impossible to survive with EB without support and comfort – it is like oxygen. One of the best ways Rowena helped us was working to get us the Disability Living Allowance (DLA) for Sasha, as I found it incredibly difficult to understand how to do this in a foreign country.
This has helped us financially support Sasha from buying her specialist soft clothing and shoes to travel expenses to get us to the never-ending medical appointments.
Through DEBRA UK we were also put under the care of the Rare Diseases Centre at Birmingham Children’s Hospital. Sasha has never received this level of care and expertise before, and I feel so grateful that she is in safe hands now. Rowena is always on the other end of the phone to answer my questions, and she will always do all she can to help me and Sasha.
My homeland is over a thousand miles away, but I do not feel alone because we have support from the DEBRA EB Community Support Team and through DEBRA, we have connected with other EB families through events like their annual Members Weekend. Members of the EB community have helped me and my family so much, including Anna, whose daughter, Jasmine, also has EB, thanks to her we secured housing, for which I will forever be grateful.
My hope for the future is that the war in my homeland will end and I hope that the war that we, and many other families, are waging with EB will end too and that we shall be victorious on both fronts.
EB is a horrific condition, the blistering and open wounds cause life-long pain and disability, but I am hopeful that with continued support, DEBRA UK will be able to secure drug treatments that could make a real difference to Sasha’s life and to the lives of many other children and adults living with the pain of EB.
