How charity partnerships support children with EB: Kira’s story

Creating life-changing experiences through charity partnerships

At DEBRA UK, we believe that collaboration is key to creating opportunities for people living with epidermolysis bullosa (EB). When charities work together, we can break down barriers and make dreams possible. Kira’s story is a perfect example of how partnership transforms lives.

Making the impossible possible

Kira, aged 11, lives with EB, a rare and incredibly painful genetic condition often called “butterfly skin” because of its fragility. Even the slightest friction can cause her skin to blister and tear, making everyday activities, like swimming, difficult and painful. For Kira, joining Dreamflight’s 10-day adventure to Orlando could have meant missing out on water-based fun with her friends.

Dreamflight is a charity that takes children with serious illnesses and conditions on a once-in-a-lifetime trip to Florida, supported by an incredible team of over 400 medical volunteers. Their goal is simple: to give every child the chance to experience joy and freedom.

How partnership made it happen

Thanks to a funding grant from DEBRA UK, Dreamflight was able to provide Kira with a special dry suit. This small but vital piece of equipment meant she could float down the lazy river at Typhoon Lagoon, swim in the hotel pool, and even experience the unforgettable thrill of swimming with dolphins at Discovery Cove – without the pain and lengthy dressing changes that would otherwise have kept her away from the group.

Zena, Kira’s volunteer guide, said:

“Without the dry suit, Kira may have missed out on these opportunities or had to spend time afterwards having her dressings change – this can be a long and painful experience and would have meant time away from her group.”

The power of teamwork

Dreamflight’s Dolphin Group Leader, Jo Ridley, said:

“It was a privilege to have Kira in our group. We hadn’t supported a child with EB before, but with guidance from her nursing team we were able to fully support her. Kira herself took charge of her own care throughout the journey. She is an amazing, inspirational young lady!”

At DEBRA, we know that living with EB can be isolating and limiting. That’s why our limited edition grant exists – to give people with EB new experiences and moments of joy. As Shamaila Zaidi, Head of Community Support at DEBRA, explains:

“We are so pleased that our grant enabled Kira to enjoy this once-in-a-lifetime opportunity. Thank you to Dreamflight and your team for making this possible.”

Why partnerships matter

This story shows what can happen when charities join forces: barriers are removed, and children like Kira can live beyond the limits of their condition.

Find out more about our existing partnerships. 

Dreamflight is committed to making sure every child feels included, celebrated, and free to enjoy the adventure, creating memories that last a lifetime.