EB affects every part  of brave Casey’s body

EB affects every part of brave Casey’s body

By Brittany King

Brave five-year-old girl Casey Connors launched The Butterfly Effect campaign this month that expects 40,000 people nationwide to become social butterflies by wearing and sharing a special tattoo in honour of those suffering from an incredibly painful skin disease.

Casey, from Clondalkin, is one of 300 people in Ireland who suffers from the ‘butterfly skin’ disease, also known as EB (epidermolysis bullosa), a genetic condition that causes the skin layers and internal body lining to blister and wound at the slightest touch.

EB Casey Rachel Connors 6

She has a severe form of EB and has to be bandaged almost from head to toe to protect her from everyday life. In fact, 80 per cent of her body is in bandages and has to be changed every two days, an extremely painful process that takes several hours.

Casey's mother Rachel said: “EB affects every part of her body with constant blisters and sores, Casey can’t chew food because blisters on her throat make it difficult to swallow and she has to be on three different types of medication every day for pain relief.”

Casey, who just started school at St Ronan’s national school cannot go out to play in the playground like other children. Her Special Needs Assistant helps her open her books and organise her things as she has limited use of her hands.

From October 23 to 29, it is National EB Awareness Week and Debra Ireland, the charity that provides hope and support for EB patients and their families, is creating a butterfly effect on social media to raise both funds and awareness to fight this devastating disease.

People can help this charity by picking up a Debra Ireland Butterfly Tattoo at any Applegreen service station and taking a selfie of their tattoo and sharing it on social media to help spread awareness and be a part of the #butterflyeffect.

You can also donate to the cause by texting the word BUTTERFLY to 50300 to make a €4 donation.

Debra Ireland spokesperson, Judith Gilsenan said: “With EB every little bit can hurt but a little Debra butterfly can help so much so please pick one up at any Applegreen Service Station.”

Debra Ireland provides day-to-day help and support for EB patients and their families and also funds research programmes to find better treatments and possible cures for EB.

You can also support Casey on November 23 at Balgaddy Child & Family Centre from 10.30am to 12.30pm. They are hosting a Coffee Morning to raise money for an Ipad since she cannot hold pencils and pens for long. The event will have food and prizes.

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