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Chris White avatar
Chris White

Whitey's Arctic Survival Trek

I am doing a 5 day Arctic survival trek for DEBRA because of the support they provide to EB families

21 %
£1,065.00
raised of £5,000 target
by 30 supporters
Donate
  • Event: Arctic Challenge, 09 Feb 2020 to 16 Feb 2020

DEBRA

We provide care and support to individuals and families affected by EB

Charity Registration No. 1084958

Story

I have been supporting DEBRA since my good friend's Pete & Kate had their daughter Poppy.  

Poppy is now 8 years old and in all her life she has never experienced a single day without excruciating pain. She suffers with the rare genetic skin condition Epidermolysis Bullosa (EB), also known as Butterfly Syndrome. This is where the skin is as fragile as a butterfly's wing and the slightest knock or bump can result in the skin either blistering or tearing away.

Life with EB is extremely difficult for Poppy. She doesn’t get the chance to be a typical 8 year old like all of her friends. She has had to accept from a very early age that she is unable to do most of the physical things that her peers do. 

Poppy’s day is dominated by 3 hours of painful dressing changes. She is bandaged from the neck down to not only protect her skin but keep her open wounds clean. People with EB are extremely susceptible to infection.

Despite all of this Poppy is one of the happiest, bravest and kind hearted little girls you will ever meet.  The strength she shows, with the unbelievable support of her mum, dad and family is truly inspiring. 

DEBRA is the national charity supporting those directly affected by, and working with, Epidermolysis Bullosa (EB) – a potentially fatal skin condition that causes constant pain due to unstoppable internal and external blistering. DEBRA provides lifelong care and support to the entire EB community.Together we #FightEB and together we will beat EB.

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30