This year my family has been fighting two wars – one in our homeland and one against epidermolysis bullosa (EB).

Both were wars we did not ask for, ones we never wanted to fight in.

Mother, son and young daughter smiling in their home. Little girl is wearing a Christmas hat.

We have been fighting EB since my daughter Sasha was born two years ago. She has junctional EB 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 broke out in Ukraine, we fled the country with my father, my partner and son, Roman. We left our home, our country, our lives.

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 Community Support Manager, Rowena. She is one of the greatest gifts my family has ever received.

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.

Give hope the power to give EB families like mine the gift of hope this Christmas. Hope for future treatments, hope for a brighter future and hope for a life free of pain.




Every donation will be match funded up to a total of £30,000 – making twice the impact.

Thank you.