Latest news with #Aoife
BreakingNews.ie
3 days ago
- General
- BreakingNews.ie
'There was a joy about her that is gone': Parents speak out about Down syndrome regression
Parents of those with Down syndrome are speaking out about their children beginning to regress when they reach adolescence or adulthood. Many families in Ireland are affected by Down syndrome regression, a condition marked by the sudden loss of previously acquired abilities that can progress rapidly over weeks or months. Advertisement The number of cases of Down syndrome regression is growing, yet in Ireland, there is no clear medical or support pathway for those affected. Symptoms include loss of speech, motor difficulties, social withdrawal, compulsive behaviours, and in some cases, individuals become non-verbal, unable to care for themselves, or engage in previously enjoyed activities. Sorcha Ward's daughter, Aoife, from Co Donegal, was around 18 when she began regressing in 2016. A once happy, fun-loving, GAA-obsessed young woman, she started becoming slow to get ready in the morning, putting her clothes on back to front, and having bouts of crying for no apparent reason. Advertisement I haven't given up for Aoife yet She used to have excellent timekeeping, often being up and ready for the day before her mother even woke up, but quite quickly, she lost interest in almost everything. 'If an elephant fell from the sky in front of us, she wouldn't take any notice of it,' her mother, Sorcha, says. That was around 2016, and now, eight years later, 'she's middling,' according to Sorcha. 'She's not like she was before she regressed, but she's better, with treatment, she's a bit better. She hasn't regained a lot of the stuff she lost; she's sort of happy enough, in some ways.' Advertisement Sorcha took her daughter to the GP in 2016 to discuss the issues, and it was 2021 before they got a diagnosis of catatonia in Down syndrome. A 'battle' for medication Aoife received medication to try and combat the regression after a six-month 'battle' for it, but that has since been stopped. According to experts in America, the longer you wait for a diagnosis, the less effective treatments are likely to be, Sorcha says. Regardless, Sorcha says, 'I haven't given up for Aoife yet'. Advertisement She had never heard of Down syndrome regression until it was mentioned to her, and Aoife's symptoms fit. 'I said, oh god yeah, she's slow getting up in the morning, she's putting her clothes on back to front, all these things, simple stuff, not knowing her numbers, stuff that she did know from school." Even when Aoife would write a card for somebody, she began getting her letters mixed up, and Sorcha says, 'I was kind of getting annoyed with her, like 'Aoife, you know that', but she just didn't know'. 'She just lost interest in everything, lost interest in football, didn't want to go to anything… She must have spent about a year in bed, she didn't want to come out of that'. Advertisement Sorcha knows that her daughter was always going to have challenges, 'and with the Down syndrome, there were things she wasn't going to be fit to do, but she enjoyed life'. There was a joy about her that's gone, it's not there now Aoife even had a job in a local café in 2016, 'and she thought she was mighty, heading into work,' her mum says. But come 2017, she was no longer able for it, 'she was getting overwhelmed, then these terrible episodes of crying, but she was really happy, and messing before this happened.' Aoife loved going on holiday and flying, and getting out of the house with her parents, even if just to do a food shop. She would answer the phone, she slept well, ate well, and 'she was as healthy as any of us in the house were, probably healthier, really'. 'It all changed' 'So that's the way she was, and then it all changed… she just got worse and worse'. She stopped sleeping and would be up all night 'rocking' in bed. 'You'd be afraid she'd split her head on the back wall, [staying up] every other night with her,' Sorcha says, and the regression affected everybody in the house. 'We weren't getting sleep then, that alone, and then just having to watch her going through, sitting on the seat and just not speaking to us, saying simple things to her and her not even knowing you were in the room'. 'That's the sense you got because she didn't look at you, she didn't look you in the eye, she wasn't aware what was going on around her'. 'When she was very bad, along with the movements, she was making noises… it was tight [awful], I definitely wouldn't want to see anybody else go through it,' Sorcha says. Awareness Sorcha wants awareness that Down syndrome regression is something that can happen, and she wants that awareness within the medical community and families of people with Down syndrome alike. 'We can't be letting these people just be like this, it's not right. If I lost what Aoife lost, if I lost my speech, if I didn't know what day it was, if I didn't know how to write something anymore, there would be somebody testing me for things, I wouldn't be just left'. 'It's not right, why does it seem to be alright to think it's up to something else, it's not that serious or whatever, it's a very serious thing,' Sorcha says. It's a whole life, it's a life-changing thing for everybody who is involved in looking after that person, it involves the whole house'. Sorcha doesn't apologise for getting emotional anymore, she says, because 'there's no harm in getting emotional about stuff, that means you care'. 'I'm her mother. I don't want the best for Aoife, I've given up on that a long time ago, because I do believe she was let down. Had this diagnosis come earlier, I believe she might have been a better Aoife now, but I did my best.' Ray Harte , of Portlaoise, Co Laois, first noticed a difference in his son, Aaron (28), around 10 years ago. 'It would've been just around the time he was leaving special school to move out into day services. That summer we noticed a whole change in his behaviours and lots of stuff like that,' Ray explains. 'The initial thing that we saw with them was like a zoning out, and we thought it might be something like some sort of epilepsy or something like that'. What we found was that the current, I suppose, medical approach to Down syndrome tends to be to lump it in under 'it's Down syndrome' 'There was a dramatic change; he would zone out, and he could be staring into space, and that was the start of it". Aaron Harte from Portlaoise. Since then, Ray and his wife have brought Aaron for 'all types of tests,' scans and anything that 'might show up something'. Tests for physical issues They checked common ailments first, he explains, testing physical issues such as eyes, ears and teeth. 'Really, what we found was that the current, I suppose, medical approach to Down syndrome tends to be to lump it in under 'it's Down syndrome,' and a lot of diagnoses tend to be around depression and stuff like that'. 'We have been through the mill with this young man and he's been through the mill with us, but it has brought huge stress on the family because you're dealing with something that you don't really know how to deal with, because like some of the behaviours, we went through phases of extreme aggression, where obviously, Aaron didn't know what was going on'. Aaron has flipped the kitchen table, thrown dinner plates, and gotten physically violent before, but Ray says that, although they have gone to multiple medical professionals and specialists, they have not been able to give him answers about what was going on with his child. After doing his own research in 2020, finding Dr Jonathan Santaro in California and his research on Down syndrome regression disorder, Ray brought it to medical professionals, but noticed that they were not aware of the disorder. Aaron has since been prescribed antipsychotic medication after the family worked with a specialist. It has helped in some areas, but 'again, nobody has said 'this is what the problem is''. 'Until you get that firm diagnosis, it's very, very difficult to deal with it. We can only deal with it in the traditional manners, which, a lot of it tends to be medication,' Ray says. Work with Down Syndrome Ireland Ray began working with Down Syndrome Ireland in 2024 to bring awareness to Down syndrome regression, after contacting them and asking for help. Aaron is now in a person-centred day service, and they have a support worker who works with Aaron on a one to one basis, and helps the parents deal with some of the behaviours and issues they were going through with their son. 'You chastise your child no matter what, whether they have Down syndrome or not, you'll chastise them if you think his behaviour if there was a problem'. However, Ray noticed there was nowhere for parents to be advised on how to deal with the behaviours that come with Down syndrome regression, 'you just didn't know what you were dealing with'. 'The element of nobody being able to actually put a finger on it, you find then at times it's a little bit hit and miss in trying to diagnose what's going on, because it could be depression, it could be anxiety, it could be psychosis, it could be, physical problems, but you can't get that,' he says. Support One thing he says helps him, though is having a support network, as he has been chairman of the local Down syndrome branch for years. 'When you did find you were under a lot of stress or pressure, that if you did have other parents you could talk to, it can always kind of lighten the load, and they always say that if you're able to talk to somebody, it makes it an awful lot easier.' However, Ray hopes that the research into Down syndrome regression in America will eventually point towards what triggers it. 'This is what makes it so difficult is that we don't know what causes it and then trying to get a diagnosis on it is very difficult, so you're kind of in no mans land, you can imagine the element of stress and worry because you don't know what's going on and again we have the added problem our man is technically nonverbal so he can't really tell you what the problem is,' he says. Short window for results 'The other concern I have on this as well is that in talking to Jonathan Santoro, from some of the work they've done in the States, there is a very short window in this from diagnosis to getting, if you want to call it, positive results. They say there's about 2.5 years that tends to be the gap where they get the best results'. 'Like my young lad now, and there's possibly other adults out there that maybe are going through this for longer periods, so we don't know, even if he does get treatment for this, we don't know where he's going to come back, where his baseline is going to be,' Ray says. 'But it's quite possible it won't be back where it was before we started out on this, and before we started out on this like he was a gregarious, friendly young lad, and goy involved in everything, everyone knew him, and now he's withdrawn, a lot of anxiety'. It creates its own element of isolation, an exclusion Ray describes his son's condition as 'as if you had a different person in the house'. Regardless, family life continues. Ray has two other sons, one older and one younger than Aaron, with his wife. 'We have to live our lives, and we have to live the lives with our other children, and sometimes it's very difficult when a lot of attention is on one individual in the house'. Ray is hopeful that they will be able to identify that Down syndrome regression disorder is what his son has developed. 'It kind of has to be done, as you say. It's your child, you have to look after them no matter what, no matter how things are.' So he continues the fight, the research, and the hope, to get an answer for his son and any other family affected by the condition.
The Irish Sun
4 days ago
- Climate
- The Irish Sun
‘Unsettled start of meteorological summer' warn Met Eireann as best day of bank holiday weekend revealed
MET Eireann have confirmed "unsettled weather' is on the cards for the June bank holiday - as the best day of the weekend is revealed. Punters visiting Bloom on Sunday will get the best of the 3 Visitors at Bloom tomorrow will get the best of the weather this weekend Credit: Fintan Clarke, Creative Coalesce 3 Mixed conditions are on the cards this weekend Credit: Alan O'Reilly from Carlow Weather suggested that 'swirls of sand' reported could be from wildfire smoke in Canada. He said: 'Apart for the smoke from She said: 'Overall it's going to be a fairly unsettled bank holiday weekend and start to the meteorological summer. READ MORE IN NEWS 'Now, there will be some drier spells, especially tomorrow and early on Monday - but they'll generally be punctuated by spells of rain and showers and it is going to turn quite breezy at times too.' Today will see 'outbreaks of rain spreading from the west through the day followed by sunny spells and showers' later on. Aoife said: 'This morning many areas are going to start off dry, but rain in the west will spread across the country through the morning and early afternoon. 'Sunny spells and scattered showers will follow behind later. Quite a breezy day today with moderate to fresh southwest winds and highs of 15C to 20C.' Most read in Irish News Tonight showers will move into the west and northwest and then will gradually spread eastwards overnight. The meteorologist said: 'The rain is going to be heavy for a time in the west and north before it eases and turns patchier towards morning. Var in the french Riviera has undergone torrential downpours and mass flooding claiming multiple lives 'Lows tonight 7C to 11C with moderate westerly winds.' Tomorrow, for the first day of June, will bring sunshine and rain. Aoife said: 'It's going to be the start of meteorological summer and it's shaping up to be the best day of the weekend with a mix of sunny spells and well scattered showers. 'The showers are going to be most frequent over the northern half of the country with the best of any sunshine further south. 'Highest tomorrow, 13C to 18C in moderate to fresh westerly winds.' The weather pro explained that the unsettled conditions are 'set to continue next week'. She said: 'Bank Holiday Monday is going to start off dry with sunshine but it's going to turn wet and windy through the day as a band of heavy rain and strong winds spreads from the west.' Rainfall 'will turn heavy in places', bringing 'strong and gusty' winds to the southwest. Aoife added: 'That will clear on Monday night to leave a breezy day on Tuesday with sunny spells and showers and Wednesday is going to be another day of sunny spells and scattered showers.' Highest temperatures on Tuesday will range between 12C to 15C, while Wednesday will fall to 11C to 15C. 3 Swirls of sand have been reported in Ireland Credit:
NZ Herald
4 days ago
- Entertainment
- NZ Herald
Irish sporting underdog story Tarrac sculls through the cliches
Competing against the landscape: Kelly Gough as Aoife. Photo / Supplied Tarrac, directed by Declan Recks, is in cinemas now. One might argue there's a place for movies that are so bad they're good, and even enjoyment to be gained from those that are so bad they're risible. But there's nothing so frustrating as a film that is competently made yet
The Irish Sun
4 days ago
- Entertainment
- The Irish Sun
I'm a mum and picked up good basics to make chic & simple co-ord from Dunnes Stores – and it cost just €40
A CLEVER mum has created a chic co-ord by pairing two separate pieces from Dunnes Stores. Fashion fan Aoife, who goes by @aoifehurley_, paired a maxi skirt with a cropped T-shirt. Advertisement 3 The outfit can be dressed up or down Credit: instagram 3 Aoife found the two pieces in Dunnes Credit: instagram Both pieces are from The lightweight look is perfect for summer and can be dressed up or down. Aoife took to She said: "The t-shirt is the one I got in white, I ended up getting it in the small, I just find that here on the shoulders were a bit too boxy. Advertisement Read more in Dunnes Stores "I paired it with this Gallery maxi skirt with pockets. "Just for running around I find this can be really flattering on, really comfortable. "I think these are going to be a great staple in your wardrobe, they kind of go with anything." The Savida Cropped Oversized T-Shirt is now available online and in Advertisement Most read in Fabulous It costs €15 and comes in sizes XXS up to XXL. And there are three colours to choose from - black, white, and light pink. I'm 50 and tried pretty new pink outfit from Dunnes Stores, here's two ways to style the skirt An official description of the item reads: "An elevated take on a wardrobe staple, this t-shirt from Savida is crafted from a heavyweight cotton-modal blend for a soft yet structured feel. Advertisement "Designed with a cropped, oversized silhouette, it's the perfect blend of comfort and style. "Savida is available exclusively at Dunnes Stores." The skirt with Aoife paired it with is called the Gallery Lucia Midi Skirt. It's priced at €25 and comes in sizes XS up to XL. Advertisement And it also comes in two colours - black and khaki green. Designers hailed the piece as "beautiful". According to the "Finished with side pockets, an elasticated waistband, and a side leg split, it moves with effortless ease. Advertisement "Gallery is available exclusively at Dunnes Stores." 3 The two pieces cost €40 altogether Credit: instagram THE HISTORY OF DUNNES STORES DUNNES Stores opened its first store on Patrick Street in Cork in 1944 - and it was an instant hit. Shoppers from all over the city rushed to the store to snap up quality clothing at pre-war prices in Ireland's first 'shopping frenzy'. During the excitement, a window was forced in and the police had to be called to help control the crowds hoping to bag founder Ben Dunne's 'Better Value' bargains. Dunnes later opened more stores in the 1950s and began to sell groceries in 1960 - starting with apples and oranges. The retailer said: "Fruit was expensive at the time and Ben Dunne yet again offered Better Value than anyone else in town. "Over time, our food selection has grown and that spirit of good value has remained strong. "Now we offer a wide range of carefully-sourced foods from both local Irish suppliers and overseas." The retailer's first Dublin store opened its doors in 1957 on Henry Street and a super store on South Great Georges Street was unveiled in 1960. They added: "In 1971, our first Northern Irish store opened, and many others soon followed. "Expansion continued in the 1980s in Spain, and later into Scotland and England." Dunnes now has 142 stores and employs 15,000 people.
Irish Independent
6 days ago
- Politics
- Irish Independent
‘I am pro-Palestine and pro-Ukraine' – students cancel their J1 US trips in protest at Trump visa rules
Representatives from AMLÉ – the newly branded Students Union of Ireland – have issued guidance on J1 applications as the US government clamps down on students entering the country. The Irish Independent spoke to several students who have already scrapped their US trips because of concerns over freedom of speech. US embassies around the world have been told to pause new visa interviews until further notice. Those who have had applications processed already will not be affected. The latest step comes after the US administration rolled out social media screening, particularly focused on students who have taken part in pro-Palestine protests. The Irish Independent spoke to Aoife (not her real name), a 21-year-old student from Co Cork, who cancelled her trip with two friends. They lost nearly €1,000 each. The three women were unable to shake off fears about potential restrictions on speaking out online. AMLÉ has told students across Ireland that if they have already been accepted on J1s to the US, there is 'no need for concern'. It urged those who want to apply to do so as soon as possible. However, it also said it 'acknowledges growing concerns around political expression, social media monitoring and student safety'. Some students maintain perceptions that a backlash against free speech could in some way affect their future. I strongly feel freedom of speech is very important and that the youth of today have a way of being able to get a message across 'I am pro-Palestine and pro-Ukraine,' Aoife said. 'Myself and my two best friends decided several months ago that it would be great to go to the US, so we signed up to the J1 process.' ADVERTISEMENT However, the friends' excitement soured when Donald Trump won the presidential race. After his inauguration he introduced strict protocols that meant students' phones and social media could be checked when entering the US. 'That changed everything for us,' Aoife said. 'This trip that we'd been so excited about wasn't the same any more. 'People were being deported, their phones were being checked and there was a restriction on free speech. 'The more we heard, the more we said, 'Oh my God, let's sit down and think about this'.' Aoife had secured a service job in a 'lovely restaurant' and her friends had gained similar employment. However, there was a constant air of anxiety about the trip, and just a few weeks ago they made the call to cancel. 'We'd spent a lot of money, but the entire landscape of America has changed,' Aoife said. 'My parents said they'd support us in what we wanted to do. They said they just wanted us to be safe. 'I strongly feel freedom of speech is very important and that the youth of today have a way of being able to get a message across. It's a very powerful voice, and to not be able to use it is appalling. 'I don't go to protests, but I support Palestinians and Ukrainians and I post my views on Instagram. It's very important to be able to express those opinions without fear of backlash. 'We wouldn't want anything we'd said on Instagram or anything we'd spoken about to be used against us. I did really think the US election would go a different way.' There's so much to love in Europe. I think some students won't visit America now at all until Trump is gone Now, instead of going on her J1 to the US, Aoife is taking time out in Barcelona. Her friends are also exploring Europe. Other students have said Europe is becoming more appealing against the backdrop of the US stance this summer. One said: 'A lot of students just won't go to the US now. It's not worth it. Many of us support Palestine and we don't agree with the US take on Gaza at all. 'We don't agree with the attempt to control free speech. America just isn't an attractive country for us right now and there's so much to love in Europe. I think some students won't visit America now at all until Trump is gone.' Aoife said that while she and her friends are glad they made the choice they did, despite losing a substantial sum of money, they understand other students still want to go. 'I'd advise them to just take care and to make sure they're well prepared for all eventualities. There's so much anxiety around this issue for students,' she said. AMLÉ president Chris Clifford said: 'Irish students should not be discouraged from pursuing cultural exchange programmes. Those who've already applied can proceed with confidence. 'For those intending to apply, we recommend acting quickly and maintaining contact with your provider. AMLÉ will continue to support and advocate for all students involved in the J1 programme.' AMLÉ remains in communication with stakeholders and continues to monitor developments closely. Students with concerns were encouraged to reach out directly for support.
