Ciara lives in constant fear of decapitation

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Ciara Micks pictured with her mum Anne. Picture: Cian Reinhardt/ilovelimerick

IF DONATING the price of a cup of coffee could stop someone being decapitated, would you do it?

That’s the stark question posed by a Limerick teenager with a condition that could end her short 16-years of life at any moment.

Ciara Micks (16) from Raheen saw her world demolished three years ago when she developed Ehlers Danlos Syndrome (EDS)

EDS affects joints, connective tissue and vital organs and within six weeks of diagnosis, Ciara went from being an active teenager, swimming and dancing to being unable to walk.

Now she is almost bedridden, needs an oxygen tank and, because of the instability of her neck and skull, lives in fear of the condition causing internal decapitation.

“I just want to be able to do normal things, see my friends, go to school. My teenage years have been taken away from me,” Ciara told the Limerick Post.

She needs an operation to take her out of constant danger of immediate death but she cannot have the procedures done here and will have to travel to Barcelona for surgery and raise €100,000 to do that.

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Her window of opportunity is small and getting smaller.

The operation would need to happen this March so she needs to raise the funds before then.

“In Ireland, they can do cervical fusion procedures, but not on an EDS patient, never mind somebody with as many complications as I have – blood pressure problems, heart problems, and my blood does not clot,” said Ciara.

“You have to take into consideration the EDS and being resistant to the anesthesia, so they have to do a lot to make it work”.

“One of the effects of Ciara’s condition is that she can’t tolerate heat and passes out. If we don’t get there in March that means pushing it back to November. Meanwhile, her life is in danger,” Ciara’s mother, Anne, told the Limerick Post.

“Anything people can donate to the fund, even the price of a cup of coffee, will help and we have such a short time span to do this,” said Anne.

From this week, the fundraising campaign goes all out with collection points in Irwin’s jewellers in William Street and Bella Italia in Thomas Street and Castletroy, Widdess pharmacy in Roches Street and other outlets around the city.

There’s also bag-packing at Tesco in Roxboro this weekend from 10am to 6pm donations can be made to Ciara’s surgery fund at www.gofundme.com/ciaraeds or contact Anne at [email protected].

See Facebook page, Ciara’s Fight for Life for more information.

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