Jyoti’s Legacy: Dragon Boat Race to Support EB Research

I’m taking part in the Dragon Boat Race to honour my beautiful sister, Jyoti Raniga, who lived with Autosomal Recessive Dystrophic Epidermolysis Bullosa (EB) for nearly 20 years.
Jyoti was just two years younger than me. From the moment she was born, EB shaped every part of our family’s life. Her skin was so fragile that even the gentlest touch could cause painful blisters and open wounds. Every day involved hours of careful bandaging, managing pain, and finding ways to help her experience joy despite the constant challenges. She faced it all with incredible strength, grace, and a smile that could light up a room.
Losing Jyoti left a huge hole in our hearts, but her spirit continues to inspire us. That’s why I’m stepping into a dragon boat this year, to paddle in her memory and raise vital funds for DEBRA UK.
Every donation will help fund research into better treatments and ultimately a cure for EB, while also supporting families who are living with this rare and devastating condition today. No family should have to face “butterfly skin” alone.
If Jyoti’s story moves you, I would be incredibly grateful if you could support my challenge. Every pound truly makes a difference and brings us closer to a world where no child has to endure what my sister did.
Thank you from the bottom of my heart for your kindness and generosity.
Jeelan Raniga Paddling for Jyoti 💙