DEBRA member Isla Grist with her dad, Andy.Andy Grist and his daughter, Isla, who lives with RDEB.

#FightEB for Isla

I live with my family in the Highlands of Scotland. My wife, Tilli, and I have two amazing daughters, Emily (17) and Isla (14).

Isla was born with recessive dystrophic epidermolysis bullosa (RDEB), a painful condition that we, like most parents, had never heard of. Given the devastating nature of RDEB, it was immediately apparent that something was very wrong. Our lives changed forever on 2 July 2008 and the family embarked on a life-changing journey together.

Isla’s skin is very fragile, both all the parts you can see and the linings of her mouth, throat, stomach and rest of the inside of her fragile wee body. Some wounds she has dealt with and the pain and anxiety she has lived with can be extremely upsetting. There is nothing currently to stop EB and that must change as quickly as possible, and we need your help to do that. Isla has already had over 60 operations, under general anaesthetic, at Great Ormond Street Hospital, 60! She is often courageous and stoic beyond words, yet always kind and thoughtful to others who are usually far more fortunate than her.

Support from DEBRA has helped us in our everyday lives from the very beginning of this journey. DEBRA gave us access to specialist advice and care for Isla, someone to talk with, some of the answers and much welcomed support, both practical and emotional.

A DEBRA funded EB nurse taught Tilli and me how to best look after Isla’s fragile skin. With support and practice, we grew more confident and are now, unfortunately, experts. Spending hours with a team of clinical carers, preparing and applying creams and specialist dressings to help Isla’s delicate skin to heal, while also trying to protect it from infection and further damage. To do this, Isla requires strong painkillers to be administered to her.

I know that Isla wants what we all want: a life free of pain. A life free of the fear that EB will continue to devastate her increasingly fragile body. She has told me this, and it was hard to hear, but impossible to ignore. And so we must continue to #FightEB.

– Andy Grist, dad to Isla and Emily