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Parents launch campaign to provide for brave Tomás

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A dedicated and determined Galway couple are battling to raise funds to care for their five-year-old son, who was born prematurely and left with cerebral palsy following a series of harrowing complications at birth.

Little Tomás McLoughlin from Roscam lost his identical twin brother Seán at just 30 days of age, while he was left with no independent movement.

Because he has spastic quadriplegic cerebral palsy, he requires 24-hour care and requires extremely costly equipment to help live as independent a life as possible.

His parents Ann-Marie Duggan (from Renmore) and Shane McLoughlin (from Ballinasloe and originally Castlerea) have set up a campaign through Facebook called ‘Tomorrow for Tomás’, where they hope to raise funds for his care, as well as costly equipment such as a €20,000 powered wheelchair and a €3,500 car seat.

Ann-Marie had an uneventful pregnancy in 2009, until she discovered at 16 weeks that she was expecting identical twins – which made the pregnancy ‘high risk’. From then, the twins were struck with a series of traumatic events and complications.

On March 10, 2010 Ann-Marie wasn’t feeling well and went to University Hospital Galway to get checked out. She was advised that her waters had started to break, and was sent to the Coombe Hospital in Dublin, because there would be a full team in place there, while UHG had only one incubator available.

“It was just over 26 weeks, and we were told there was a 70% chance they wouldn’t survive. So we got the ambulance to the Coombe. I was admitted and after 11pm that night, I tried to turn in the bed and blood started flowing suddenly. The nurse got the Registrar, and heartbeats were being checked . . . it was like watching a scene from ‘ER’,” she says.

Her placenta had ruptured and she was later told that if she left Galway an hour later, she would have bled out and died.

Shane left the room at 11.15pm to let his wife get some rest – Seán was born at 11.23pm and Tomás at 11.25pm.

“My first interaction with them, they were in incubators – it was almost like they were in Ziplock sandwich bags. They were 2lb 3oz and 2lb 1oz,” he says. For Ann-Marie, the sound of the machines keeping her boys alive is something she will never forget.

Two days later, Tomás’ machine went “haywire” and he suffered extremely severe bleeding on both sides of the brain, which left him brain-damaged. A short time later, Seán also suffered a bleed, but it was not as severe as his younger brother’s.

“The doctor said Tomás would have cerebral palsy and will never walk or talk. We were broken-hearted. I ploughed on and was expressing milk to keep busy. I was racked with guilt, wondering if I did something wrong, if it was my fault.

“I was in the Coombe and saw babies being born 8lb and 9lbs who had to be weaned off drugs. I met a girl in the lift who was full-term and offered me a drink from her bottle of vodka. What did I do wrong?” she recalls.

Shane says: “It was all very surreal. But when you’re put in that situation, you just have to get on with it. There’s nothing else you can do.”

“Around 25/26 days, Tomás was having a bad night, then a good night,” says Ann-Marie. “We were told he was not going to survive, then by the following morning, he would have rallied again.

“On day 27, they were still in ICU and the nurse asked if I wanted to hold Seán in ‘kangaroo care’ (which allows skin-to-skin contact). I had half-an-hour holding him. We got to hold him twice each.

“At 4am, we got a call to say Seán was very, very sick, that he had NEC (Necrotising Enterocolitis, where the intestine perforates and allows waste products into the bloodstream).  That evening, we were half-way through a meal, even though we couldn’t eat, and were told they needed to move Seán to Crumlin Children’s Hospital.

“We were told that a perforation of the bowel could be operated on, but a full collapse couldn’t (the latter would inevitably result in death). We didn’t know which it was. Ten minutes in, the surgeon’s hand came out. I’ll never forget Shane’s roaring and crying. There was nothing they could do. He was kept on life support back in the Coombe and close family came up to see him.

“We wanted to wait until after midnight so he would be 30 days old [before switching off life support]. It’s a very cold thing. You’d never want anyone to go through it,” says Ann-Marie.

He was subsequently buried in Rinville, Oranmore, to be close to the sea. During the burial, the couple had to rush to Crumlin, where Tomás had had an operation for NEC due to a perforated bowel. His recovery was excruciatingly slow – he was being given 0.1ml of sterile water per day, gradually increasing to 0.5ml after a week.

Shane says: “That was a huge step for Tomás; waiting for small incremental changes meant so much psychologically to us.”

Despite doctors saying Tomás would never walk or talk, Ann-Marie was driven by a devoted determination, and researched early intervention.

She purchased black and white pictures and book, laminated them and placed them on the incubator where Tomás would see them. After 105 days, the couple were able to leave the Coombe with their son.

Fortunately, Ann-Marie’s brother Seán is a Redemptorist priest, and the Order was able to accommodate the couple at the Marianella Centre in Rathgar during their time in Dublin, for which they are eternally grateful.

“The Redemptorists couldn’t do enough for us, we had food each day, a bed, they even bought a secondhand couch, an armchair and TV. They did everything they could for us.

“Seán wasn’t even ordained a priest a year, so it really was a baptism of fire for him,” says Shane.

Despite the learning aids, the couple were concerned Tomás did not seem to be making good progress as he wasn’t meeting the milestones of movement, and wasn’t making huge sounds or talking.  But that concern was short-lived.

“Now he’s just gone five, he can read Ladybird books and is a real chatterbox. You can’t shut him up now! I really think the early intervention made a huge difference. The flash cards, the black and white pictures, the DVDs, everything. We’re over the moon with the progress he’s made,” says Ann-Marie.

It is a remarkable improvement for a premature baby who lost his twin, and had also been through Grade 3 and 4 bleeds to his brain; gut drains; ileostomy (opening the stomach wall to remove waste); lung drains; chronic lung disease and retinopathy of prematurity (abnormal development of the retina).

Now, Tomás has very good cognitive skills, but relatively no independent movement. The specialised equipment he requires is exceptionally difficult to get through the HSE and can cost tens of thousands of euro to buy privately. For example, a powered wheelchair – which he is currently being trained by Enable Ireland to use with his head – will cost around €20,000.

A car seat that would normally cost around €300 will cost €3,500, or it does not meet insurance company requirements.

“Everything adds up. Almost all of the items or equipment or technology are beyond affordability for us. You will always need specific care and that costs money,” says his father.

“It is just the two of us caring for him and we are both working. We get twelve hours [support] per week from Enable Ireland, but will always need specific care, and that costs money. He needs one-on-one attention.

“So we’ve set up a campaign called ‘Tomorrow for Tomás’ to raise funds for all he’s going to require into his future. I was slow to ask people for help, I suppose that’s a matter of pride. But everything adds up and we do need help,” adds Shane.

Tomás is also being trained to use an ‘Eye Gaze’ system at the moment – ahead of starting school in Merlin Park in September. This is a system which tracks the eyes and moves a mouse pointer around the computer screen, while blinking and staring also activates the communication system.

However, if the HSE will not fund the system, it will cost the family €4,500. Otherwise Tomás will not be able to access the curriculum in school.

“The HSE won’t give a definite answer on anything. It could be six months before an application goes through, then another six before the manufacturer comes through. It’s extremely frustrating. We could be waiting another two years for a powered wheelchair. The system is wrong,” says Shane.

The couple have two other boys, Matthew (3) and Luke (16 months), who were both born perfectly healthy.

■ You can find out more by visiting ‘Tomorrow for Tomás’ on Facebook. Donations to the Tomorrow for Tomás’ fund can be made to AIB, Newcastle Road, Galway. BIC. AIBKIE2D. IBAN: IE97AIBK93743621817041

CITY TRIBUNE

Murals are part of initiative to restore pride in Ballybane estate

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From the Galway City Tribune – A poem about litter forms part of a vibrant colourful new mural painted on the walls of a City Council estate in Ballybane.

The poetry and artwork by local artist Irene Naughton is part of an initiative to restore pride in Sliabh Rua.

The final two lines of Ms Naughton’s poem, called The Dragon’s Foot, read: “The land, the sea and the river all get hurt when we leave a littered footprint on the earth.”

The full poem was painted onto boundary walls as part of a large colourful mural that was created by Ms Naughton.

The street art includes handprints from children living in the estate on the city’s east side.

It also depicts an enchanted forest, a dragon sitting atop Merlin Castle, a view of the Burren, a wolf, butterflies, insects and foliage, as well as a man playing the guitar, a former resident who died.

Ms Naughton, who was commissioned by the City Council’s Environment Department, said it took about five days to complete.

“The residents were very, very helpful and kind,” she said.

Councillor Noel Larkin (Ind) explained that the mural was part of a wider, ‘Ballybane Matters’ project, which stemmed from Galway City Joint Policing Committee (JPC).

“We were doing a lot of talking at the JPC about anti-social behaviour, and it seemed to be more prevalent in the Ballybane area. When we boiled it down, it was in the Sliabh Rua and Fána Glas areas.

“Month after month it was just talking. So Níall McNelis [chair of the JPC] said we should set up a small group to hone in on exactly what was going on,” he said.

A group was formed to focus on improving the Council estate of about 40 houses.

As well as Cllr Larkin, it included: Sergeant Mick Walsh, Galway Garda Crime Prevention Officer and community Gardaí Maria Freeley, Nicola Browne, Kenneth Boyle and Darragh Browne; Fr Martin Glynn; Imelda Gormley of Ballybane Taskforce; Councillor Alan Cheevers; Donal Lynch, chairperson Merlin Neighbourhood Residents’ Association; and two members of Galway Traveller Movement, Katie Donoghue and Kate Ward.

Ms Gormley carried out a survey to get feedback from residents.

“A lot of the problems people had were horses on the green, people being harassed going in and out of estates, trailers full of rubbish left around the place, the City Council not cutting the grass, and anti-social behaviour,” explained Cllr Larkin.

Small improvements, with community buy in, has helped to revitalise the estate.

Cllr Larkin praised Edward Conlon, community warden with the City Council, who has been “absolutely brilliant”.

“He looked funding that was available to get trees or shrubs and to get the grass cut more regularly,” he said.

“Fr Martin got a residents committee set up because he knew people through the church, and that means there is community buy-in, people are actually taking an interest now.

“When we started originally, Sergeant Mick Walsh mentioned ‘the closed curtain syndrome’. You go into your home in the evening close your curtain and don’t want to see what’s going on outside. Whereas now, with community pride restored to the area, if somebody is acting the maggot outside, people are keeping an eye on it and that curbs anti-social behaviour,” said Cllr Larkin.

Covid-19 delayed the project but it “came together very quickly” once work started.

Cllr Larkin said that the project will move to other estates in Ballybane, including Fána Glas and Castlepark, but they also plan to maintain the progress made in on Sliabh Rua.

“We decided to concentrate on Sliabh Rua, because if we could crack Sliabh Rua we could crack the rest of them. Pride has been restored in the community,” added Cllr Larkin.

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CITY TRIBUNE

QR codes hold the key to podcast tour of Galway City

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From the Galway City Tribune – From singer-songwriter Ed Sheeran’s teenage days busking on the corner of William Street, to the rich past of the 14th century Lynch’s Castle on Shop Street, a new interactive tour of Galway City covers modern and ancient history.

Regional tour guide Jim Ward has created a series of podcasts detailing the history of eight places of interest in Galway City.

The Salthill native has created two-dimensional QR codes that are located at each of the eight locations, which allow visitors to download the podcasts to their smart phones.

Each podcast gives a flavour of the tours that Jim gives in ‘real-time’ when he leads hordes of tourists around the city’s famous sites.

The podcasts range from five to ten minutes and are located on or near buildings at the following locations: Eyre Square, William Street, Lynch’s Castle, the King’s Head, St Nicholas’ Collegiate Church, the Latin Quarter, Spanish Arch and Galway Cathedral.

During the Covid-19 Lockdowns, Jim gave virtual tours by video through sustainable tourism website, Flockeo.

He has also brought Ukrainian refugees on tours through the city streets to allow them to become familiar with Galway’s rich history.

The podcasts are hosted on his website, galwaytrails.ie and are accessed on mobile devices through via QR codes scanned onto posters.

Jim said he was grateful to the businesses of Galway, who have allowed his to put up posters on their premises near the sites of interest.

“I propose to ask Galway City Council for permission to place some on public benches and poles at a later date.”

He said the idea was to “enhance interactive tourism in Galway and bring connectivity to the city”.

He also has other plans in the pipeline, including rolling-out an interactive oral history of certain areas such as Woodquay.

This would involve interviewing local people of interest in certain historic parts of the city, which could be accessed through podcasts. The stories would be their own, or that of local organisations.

“The recordings would be accessed through QR codes on lamp posts or park benches and would provide a level of interactivity and connectedness with our historic town,” Jim added.

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CITY TRIBUNE

Renters in Galway City have to fork out an extra €11,500 annually

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From the Galway City Tribune – Renters in private accommodation in Galway City are paying, on average, around €11,500 more per annum than they were at the bottom of the market ten years ago.

According to figures published by property website Daft.ie this week, the average monthly rent in the city now stands at €1,663 – that’s up a whopping 138% since the market trough in early 2012, when it stood at around €700.

At the end of June this year, the average monthly rent had risen 16.4% – one of the biggest jumps in the country.

Nationally rents in the second quarter of 2022 were an average of 12.6% higher than the same period a year earlier, as availability of rental homes reached an all-time low.

County Galway has seen a similar pattern of increases – average rents stood at €1,184 per month, up 12.4% on the previous year. The averages have also more than doubled – up 132% – since the bottom of the market.

At the moment, there are fewer than 60 properties available for for rent in Galway city and county – the lowest figure recorded since the Daft.ie rental reports began in 2006.

A breakdown of the figures shows that a single bedroom in Galway city centre is renting for an average of €588 per month, up 19.5% on June 2021, while in the suburbs, a similar room is commanding €503 per month, up 15.9% on a year earlier. A double room is generating €633 (up 16.4%) in the city centre and €577 (up 19.2%) in the suburbs.

In the city, an average one-bed apartment is currently ‘asking’ €1,110 per month (up 17.3% year on year); a €1,297 for a two-bed house (up 15.6%); €1,542 for a three-bed house (up 16.9%); €1,923 for a four-bed house (up 21.8%) and €2,016 for a five-bed house, which is up 10.6%.

Ronan Lyons, Associate Professor of Economics at Trinity College Dublin and author of the Daft report, pointed to a resurgent economy which has accentuated the chronic shortage of rental housing in Ireland.

“The shortage of rental accommodation translates directly into higher market rents and this can only be addressed by significantly increased supply.

“While there are almost 115,000 proposed rental homes in the pipeline, these are concentrated in the Dublin area. Further, while nearly 23,000 are under construction, the remainder are earlier in the process and the growth of legal challenges to new developments presents a threat to addressing the rental scarcity,” he said.

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