My daughter, 22, was diagnosed with rare tumour after earache – now she's in horrendous pain & needs life-saving op
WHEN Maeve Duffy began experiencing a "persistent" earache, she never imagined it could be a rare and aggressive tumour that would leave her in "unimaginable pain".
The "beautiful" young Co
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2
Maeve Duffy was diagnosed with a rare tumour when she was just a teenager
Credit: Collect
2
Maeve and her loving family are doing everything they can to ensure the life-saving surgery takes place
Credit: Collect
Maeve, who is now 22-years-old, was diagnosed with facial nerve schwannoma when she was just 17.
The rare benign tumour grows on the nerve that controls facial movement and sensation and can result in facial paralysis, facial spasms, dizziness, balance problems and hearing loss.
And after exhausting every treatment available in Ireland - including radiation and years of delays and consultations - her doctors have told her that the tumour is inoperable here.
But there is hope.
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READ MORE IN HEALTH
Specialists in
Maeve's desperate mum Siobhan is doing everything she can to raise the funds needed for the operation to ensure her little girl can return to her life.
Speaking to The Irish Sun, Siobhan told how the Covid-19 lockdown forced a surgery that could have removed Maeve's tumour to be cancelled.
She said: "It started with an earache which we thought was just an earache. Then they said it was what they thought was a polyp.
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"They tried to remove it, then went for surgery and when they did surgery they discovered it was a tumour and we were sent from Waterford to Dublin to Beaumont and she had all her scans and was scheduled for surgery in Beaumont.
I was diagnosed with breast cancer after noticing small mark - I'm not giving up, I'll give treatment all I've got
"Unfortunately lockdown happened the day before her surgery and it was cancelled.
"So actually 14 months later we got back to Beaumont and they redid all the scans and they decided it was inoperable at that stage."
Maeve was just 17-years-old when this took place and was worrying about her schoolwork and the impact this may have on her dreams to study biomedical science.
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Siobhan explained: "She was doing her Leaving Certificate, she knuckled down with her study and tried to put it to the back of her mind. She wanted to go to college.
SYMPTOMS WORSENING
"We were worried about it but there was a lot happening at the time and she really did just want to get it sorted and get her Leaving Cert done and move to college.
"Maeve is obviously very bright and she wants to do biomedical science but this has all put her studies on hold.
"She's not been able to study or go to college or actually do anything because of the pain and because of the side effects of the drugs.
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"The drugs are almost as bad as the growth."
In 2022, as Maeve's symptoms started to worsen, the brave young woman underwent five rounds of aggressive radiation therapy, the maximum safe dose.
The goal of this was to stop the tumour's growth and relieve her symptoms.
However, heartbroken mum Siobhan told us how, after the radiation, Maeve admitted: "Mam, I just can't stick the pain, it's horrendous".
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The side effects of Maeve's radiation were severe and the tumour did not change as a result of the intense treatment.
Instead, she developed necrosis, triggering constant, excruciating pain.
She's 22 and she wants to socialise and go to college but can't because of her constant pain, nauseousness and dizziness. It's just not possible for her."
Siobhan, Maeve's aunt
Maeve was placed on high-dose steroids and Pregabalin - the side effects of which are immense.
And Siobhan described the drugs as "debilitating", telling how her daughter has been battling the fierce side effects of the medication for two years now.
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She explained: The side effects are not good, her quality of life has been reduced to a minimum.
"Maeve will never get off those tablets or drugs as long as that tumour is there.
"Our only hope to get her back is to get the tumour removed and that is not going to be done in Ireland - there is no one to do it."
Siobhan told how the Duffy family was "so lucky" to get into contact with specialists at the International Neuroscience Institute in Hanover, Germany, renowned for treating complex cases like Maeve.
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The family met the team and within weeks it was confirmed that surgery to remove Maeve's tumour could be performed.
Siobhan's mum said the team of medical experts have no fear of facial paralysis or any side effects of the operation and believe that, within a few months of the surgery, Maeve can be taken off all the medication she is currently taking.
The surgery can be completed as soon as July 8th - but the family has been forced to put the operation on hold until they raise enough to cover the staggering €107,000 price.
HOW CAN YOU HELP?
MAEVE'S family has set up a GoFundMe page to raise enough money to cover her surgery in Hanover, Germany.
At the time of writing, over €50,000 has been raised to support the family - but they need the full amount in order to go through with the operation.
Writing on the page, Maeve's family and friends said: "Their surgical team has the expertise to give Maeve a real chance at recovery. But the cost of this surgery is over €107,000, and time is critical.
"We're doing everything we can to raise the funds to get Maeve to Germany for this life-changing surgery.
"If you're able to donate—no matter how big or small—it would mean the world to Maeve and all of us who love her.
"And if you can't donate right now, sharing this page with your friends, family, or on social media would be a huge help."
You can
Siobhan said Maeve is "really looking forward" to getting the surgery over and done with so she can return home and follow her dream.
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The young woman has a deferred place in a biomedical course in Maynooth University.
Siobhan said: She's very eager to get back to college and study, and she's also got job offers that she can't even think about at the moment.
"It's just to get the surgery over to get her life back so she can plan her future."
Siobhan said the family is remaining strong for Maeve, adding: "We need to carry her."
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FAMILY'S PAIN
Siobhan's sister Margaret told how the situation is "very hard" on the family, including Maeve's two younger brothers.
She said: "It's hard on them to see her suffering and not being able to go to college, not being able to do the things she wants to do.
"She's 22 and she wants to socialise and go to college but can't because of her constant pain, nauseousness and dizziness. It's just not possible for her."
Speaking about Maeve, Siobhan described her as a "beautiful person".
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She told The Irish Sun: "She's a really sweet kid. She's beautiful, a beautiful person, so kind.
"I would say a little on the old fashioned side as in she's not your average trendy 22-year-old.
"She's never been that person, she's always very simple. She's just, you know, she's really sweet."
And speaking about the whopping €50,000 that has already been raised for Maeve since the GoFundMe was launched just over a week ago, Siobhan said the support from people has been "unbelievable".
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She said: "It's just been unbelievable. People have just come out of the woodwork. It's amazing."
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Speaking about Maeve, Siobhan described her as a "beautiful person". Advertisement She told The Irish Sun: "She's a really sweet kid. She's beautiful, a beautiful person, so kind. "I would say a little on the old fashioned side as in she's not your average trendy 22-year-old. "She's never been that person, she's always very simple. She's just, you know, she's really sweet." And speaking about the whopping €50,000 that has already been raised for Maeve since the GoFundMe was launched just over a week ago, Siobhan said the support from people has been "unbelievable". Advertisement She said: "It's just been unbelievable. People have just come out of the woodwork. It's amazing."
