A 14-year-old girl living in Sixmilebridge is being denied assistance by the State towards the costs of life-saving surgery. Unfortunately for young Aoife Sage, her case doesn’t fit neatly into the either the HSE’s Treatment Abroad Scheme or the Cross Border Health Directive.
Aoife suffers from Ehlers-Danlos Syndromes (EDS), a rare genetic order treatable by a small number of specialist neuro-surgeons. After five years of chronic and debilitating pain, her only hope lies with a private clinic in Barcelona.
Clare Fianna Fáil deputy Timmy Dooley met Aoife’s mum Susan at a fundraiser in Treacys Oakwood Hotel, Shannon, to raise money towards the €100,000 needed for a spinal fusion operation in September.
Two weeks ago, Deputy Timmy Dooley, raised the case of Aoife Sage case and that of 10-year-old Dysert girl, Zara Cronin, in Dáil Éireann. He explained to Health Minister, Simon Harris, that Aoife’s condition, “can be improved, along with her quality of life and mobility, if she can access surgical intervention that fuses parts of the head and spine.”
Replying to Deputy Dooley, Minister Harris said he “would be happy to facilitate a meeting with the Deputy and some of these parents to discuss the matter in the coming weeks.”
It’s now two weeks later and with the Dáil about to rise for its summer recess, the Sage family is still awaiting the Health Minister’s call.
Like any other mother, Susan Sage simply wants the best for her child. Sue is very grateful to local councillor John Crowe for his kindness and to Timmy Dooley for highlighting Aoife’s case and has noted that Timmy’s Dáil intervention has had 19,000 views.
According to Sue, EDS sufferers are appealing for care and support. “It beggars belief,” she said, “that as a society we can’t look after our most vulnerable children.”
The family are trying to raise €100,000 for Aoife’s medical expenses and recuperation in Barcelona as her movement will be severely restricted after five vertebrae at the top of her spine are fused during the procedure.
Commenting on the fundraising effort, Sue says, “We are very blessed with the number of people supporting Aoife. It’s so heart-warming to have the communities of Shannon, Sixmilebridge and Newmarket-on-Fergus pulling together for us.”
To date, fundraising has brought in around half of what is needed and the family is appealing to the generosity of the local business community and individuals for donations.
“I have to say people have been very kind,” says Sue, “I’m running out of superlatives but I take great heart even when someone stops me in the street to ask how the appeal is going. In their own way, they are telling me that Aoife is in their thoughts and that means so much.”
Sue remains hopeful that the Government will remedy the present situation for EDS sufferers. “At present, the Treatment Abroad Scheme and Cross-Border Health Directive are unworkable for those suffering from EDS in Ireland,” she said.
“Treatment Abroad only allows for treatment by a public consultant in a public hospital. In our case, the majority of testings done in the UK were private as there is no public availability and it’s the same with the private hospital Aoife that has to go to in Barcelona.
“The Cross-Border Directive is there but you must pay up front, so you still have to fundraise, and then you may be able to claim a percentage back. It’s been like this for many years so why hasn’t anything been done? It’s just not good enough,” she said.
“My mother used to say that doctors bury their mistakes and, you know, it’s true. You’d die waiting for health care in this country,” said Sue.
However, she does have some sympathy for Simon Harris who, she thinks has been handed a ‘poisoned chalice” with regard to the HSE. While she is pleased that the Health Minister has said he will meet, so far she hasn’t heard from him.
Sue recalls that after the recent referendum Minister Harris said, “We will stand shoulder to shoulder with women. We’re going to stand in your corner, we will hold your hand”.
She commented, “I just wonder why that is not extended to my daughter. The State is happy to export my daughter for treatment abroad, isn’t that the same thing that the referendum was fought over?”
“It’s so unfair that my child is suffering and it’s been left to us, as parents, and our community to raise money for life-saving surgery that will save Aoife’s life. Why is our Government letting that happen?”
Aoife told how she was diagnosed with EDS at the age of nine when she was in a lot of pain after suffering from chronic tonsillitis since she was four. A year earlier, she had her tonsils and adenoids removed.
When she still complained of joint pains and constantly feeling unwell her parents Declan and Sue sought a new diagnosis but the condition only got worse. Aoife recalls, “After I was diagnosed, I genuinely thought, yeah I’m going to get medication and I’m going to get better, and that’s what I thought.”
A bright, intelligent and talented teen, Aoife loves to draw, creating digital art and animation on her laptop and tablet. “It’s my favourite thing to do,” she says.
Because she has been sick for five years and unable to go out, Aoife’s friends stopped calling. “They will be going off to parties and discos and I can’t do that so they’ve kind of just moved on with their lives.”
While this is something Aoife has come to accept, she enjoys a great relationship with her two brothers and sister who keep her up to date with what’s happening.
Aoife also loves her two pet dogs, “my black dog minds me when I’m out of my room, she’s a really lovely pal to have,” she said.
Minister Harris should reflect on this extract from the 1916 Proclamation: The Republic guarantees… equal rights and equal opportunities to all its citizens, and declares its resolve to pursue the happiness and prosperity of the whole nation and of all its parts, cherishing all the children of the nation equally…”