SUE Sage’s heart breaks when her 14-year old daughter, Aoife says “I’m not living mam. I’m existing”.
The bright young teenager is practically bed-bound and housebound because she is living in danger of dislocating her neck, which could paralyse or even kill her.
Aoife suffers from the debilitating genetic condition Ehlers-Danlos Syndrome (EDS) which leaves her joints liable to dislocation and she suffers constant pain.
To take her out of immediate life-threatening danger, Aoife, from Sixmilebridge, needs surgery which can only be performed in Barcelona at a cost of €100,000.
“Aoife missed so much primary school and while she went to secondary school for a few weeks, she couldn’t continue. She is socially isolated, she has no friends she’s in pain all the time and she is all but housebound.
“If she can get out of bed and come downstairs for an hour a day, that is a good day,” Sue told the Limerick Post.
Aoife’s three siblings, Aine (21) Eoin (16) and Aodhán (10) all suffer from the condition, but Aoife is the only one so seriously impacted.
“She suffers so much and yet she is the most undemanding child. 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”.
The family have to raise the money as the specialist surgery can only be performed in the private clinic in Barcelona, ruling out the Treatment Abroad fund and the Cross “Border Treatment fund which requires that patients pay up front and, even then, only some of the cost may be refunded.
Mum Sue and dad Declan have to rely on family friends and community to help them take Aoife to the UK and now to get her to Spain for this vital surgery.
“This is our child’s life. She has no quality of life and, apart from taking her out of immediate danger, it won’t cure the EDS. The best we can hope for is that she can get some relief,” said Sue.
There is a fundraiser for Aoife this Saturday, June 8, when DJ James Sexton will take revellers back to the ’80′s, with music, finger food and spot prizes in the Oakwood Hotel in Shannon 8.30pm, tickets €20.
Anyone who would like to help Aoife can log on to gofundme.com/aoifes-surgery-fund