Fight EB: Isla's story

#FightEB for Isla

We’re a normal family. Our children, Isla (10) and Emily (13), go to school, have their friends round and like to play on the trampoline whenever they get the chance. 

But when one of your children has EB, you have to redefine normal.

Isla has been helping us do this since the day she was born.

When Isla came into this world, we knew immediately something was wrong. She was missing skin on her hands and feet and was immediately rushed to the hospital. For the first six months of her life, we carried her around on a pillow as the slightest knock or rub could tear her skin and we had no idea how to look after.

Support from DEBRA helps us in our everyday lives.

DEBRA gives us access to specialist care for Isla and respite in the DEBRA holiday homes for the whole family – it’s had a huge impact on our lives.

An EB nurse, part funded by DEBRA, showed us how to look after Isla’s skin. With support, we grew more confident. Spending hours applying dressings to protect her delicate skin and administering morphine for the pain – is now just part of our daily routine.

Our normal is dressing changes and painkillers.

EB affects every part of Isla’s life – the continual blistering causes constant pain and itching as well as severe problems eating and drinking. She’s lost a lot of weight. She can’t run around like other children either.

“EB stops me from having a normal life, and that is what I want,” she says.

Every step, or a knock or bump, can cause permanent damage. Our elder daughter Emily would love to have a sister she could play fight with, but that is out of the question.

Our normal is two trampolines.

Trying to do normal activities is difficult. EB brings daily challenges that we have to find different solutions to. We have two trampolines in our garden. One for Emily, because Emily likes to bounce really high, and one for Isla so that she can still join in without getting hurt. They both have their friends round and have fun.

Normal is different for everybody.

To strengthen knowing we are part of a wider community of people facing the same challenges and acting together. The more we meet other people facing EB – at DEBRA’s Members’ Day and Get-Togethers – the more we realise that normal is a difficult concept to define.

Life with EB is not an abnormal life, it’s just a different life. DEBRA is funding pioneering research into effective treatments and a cure for EB. We’re fundraising for DEBRA to make this happen and help give Isla the pain-free life she so desperately wants.

In the meantime, our normal is about making the most of life. That’s exactly what Isla is doing.

Rachel and Andy Grist – parents to Isla and Emily