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Christmas Appeal 2021

Christmas Appeal 2021

You can give the gift of care this Christmas to people living with EB.

DEBRA UK works in partnership with the NHS to deliver an enhanced EB healthcare service,
relied upon by people living with EB in the UK like Naomi.

Naomi was diagnosed with Epidermolysis Bullosa Simplex (EBS) when she was born almost a decade ago.

When Naomi's mum, Carly, heard the words ‘Epidermolysis Bullosa’ for the first time, she never imagined the long-term impact it would have on her daughter’s life. EB Simplex has left Naomi needing a wheelchair, struggling to hold a pen at school and facing a life of agonising pain.

Carly has courageously shared her family's story with us this Christmas:

"EB Simplex is a hidden disability. It causes excruciating blisters to form mostly on the hands and feet, sometimes they are even concealed beneath the skin. You might see her smiling face, where things appear ‘normal’. You do not see the pain as she lances her blisters every morning or hear her cry due to the agonising feeling of standing on her feet too long.

Naomi’s EB Simplex leaves her wheelchair bound for most of the year. I was not prepared for the impact of this, as the wheelchair seemed too big for my little girl – a girl who should have the world at her feet.

One of the best things the EB nurses provide is reassurance which is valuable to any EB parent. They can give us real life stories of hope and how other families get through these challenges. The help we receive from the EB nurses goes far beyond the hospital doors.

EB is a condition that I did not know myself until nine years ago. So having a nursing team with specialist EB knowledge is vital. They see children, like Naomi, every day and with all types of EB. It brings us a great sense of comfort, to know we are not facing this cruel condition alone.

It is hard to think what our life would be like without the EB nursing team - we would feel lost, lonely, and isolated. The EB nurses have helped us at our most vulnerable, they have provided smiles on worrying days and been a caring shoulder to lean on when we have felt most alone. They are a beacon of light and have given us the gift we needed most.

You have the power to give the gift of care this Christmas. Please donate to support not only my family, but future families facing a life with EB."


Christmas Appeal 2021

Christmas Appeal 2021

Give the gift of care this Christmas