Help 14-year-old Aoife Sage raise €100,000 for lifesaving surgery

Aoife Sage

Help 14-year-old Aoife Sage raise €100,000 for lifesaving surgery

Aoife Sage

Aoife Sage in transport to receive care.

Aoife Sage, a 14-year-old girl from Sixmilebridge is a bright, caring and wonderful young woman currently going through a living hell. Aoife suffers from the debilitating genetic condition Ehlers-Danlos Syndrome (EDS) that leaves her joints liable to dislocation and she suffers constant pain.  As a byproduct of that, she also suffers from Craniocervical Instability (CCI) and as a result, Aoife’s skull is slipping both backward and forwards more than it should, because of structural instability in the vertebrate. This causes Aoife a huge amount of pain and has even caused episodes of temporary paralysis from the neck down, risking both permanent paralysis and possibly death.

Most days Aoife is either bedbound or housebound and relying on the care of her parents, Susan and Declan. “It’s heartbreaking, it’s not what any parent would wish for their child, to watch her in so much pain and to not be able to do anything is absolute torture, my heart breaks for her,” Susan tells me.

To take her out of immediate danger, the only option for Aoife is to undergo lifesaving surgery in Barcelona. The family have to raise the money as the specialist surgery can only be performed in the private clinic in Barcelona

“We had no option but to go to the UK first because there are no specialists in EDS here in Ireland. The only place she can have this surgery is in Barcelona, “ Susan says.

“The surgery will eliminate the immediate risks to her life first and foremost as well as hopefully give her a quality of life that she deserves. It’s not natural for a child to be at home, to be so isolated and to have no friends. She’s an incredible child and extremely bright. She is one of the least demanding children you will ever meet despite everything she’s gone through.”

The surgery date has been booked for September 27 in the hopes that the family will raise the €100,000 needed to cover the cost of the surgery and the month-long recovery it will need. Currently, they have raised just over €28,000, but they need your help to raise the remainder and give this girl the life she deserves.

“It’s really hard to put yourself out there as publicly as this, and it’s difficult for Aoife too, you have to remember that she is just a teenager and it’s her face that people associate this with, that’s very difficult for a teenager. But the thing is we have to do it because there is no support from the state, we have to rely on the community and our family so much to support us.”

The family are so grateful for all the donations and support that they have received, “There are no words, I am so grateful to everybody who has supported us. I wish there was another word besides thank you because thank you never seems to be enough. All of the family, we appreciate each and every person who has helped us. People who have donated, who have issued kind words to us, who have prayed for us, each of these people have helped hold us up and keep going.”

The difficulty of receiving treatment for EDS in Ireland has been an upward battle for the family with Aoife’s three other siblings also suffering from the disease. Because of this, the family has started the new hashtag #takeourhandstoo on social media, in the hopes of sharing their story as well as many others and bringing attention to the lack of support in Ireland.

The family has a fundraising event taking place at the Oakwood Hotel in Shannon on Saturday, June 8. DJ James Sexton will be playing your 80’s faves all night long. There will also be spot prizes available throughout the night, and tickets only cost €20, be sure to buy yours soon and help support this brave young woman.

 

To donate to the Aoife Sage GoFundMe page, go here.

To read about more cases of life-limiting illnesses, go here.

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