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£731.16
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Mabel Ruby avatar
Mabel Ruby

Butterfly Walk

We are taking part in the butterfly walk for DEBRA because we want to support Ruby's family who are effected

435 %
£731.16
raised of £168 target
by 34 supporters
Donate
  • Team members: 🌞Mabel, Ruby, Daisy, Harry, Holly, Ellie, Florence, Fyfe🌞
  • Event: Butterfly Walk to #FightEB, 06 Jul 2019

DEBRA

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

Charity Registration No. 1084958

Story

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.

Ruby's dad's story;

EB is a devastating skin condition which runs through my family, so this is a charity that means a great deal to me. As my two daughters both have EB, we are in constant contact with Debra and experience first-hand what great work the charity does to support young families like us.


Not a day goes by without my girls feeling pain or discomfort, skin blistering or tearing by a knock to the knee or friction from the carpet. Luckily they only have mild dystrophic EB; severe cases of this condition can cause cancer at a young age, disability and in some cases fatality. Please watch the video below for more information on EB.


As the condition is so rare (5000 cases in the UK), Debra relies solely on fundraising to continue research so one day they can find a cure.

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