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Enable Ireland helps brave Galway girl achieve her ambitions

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This is No Limits Week, Enable Ireland’s annual effort to highlight the work the organisation does to make life so much better for those who use its services – like nine year old Lucy MacConnell from Spiddal. Here her mother Dr Niamh O’Brien MacConnell tells how Enable Ireland has helped her daughter live her life to the full.

Our daughter Lucy has Osteogenesis Imperfecta Type 3, a severe brittle bone condition that results in her being of short stature with a high risk of fractures.

Lucy MacConnell enjoying summer camp at Enable Ireland Galway.

Lucy MacConnell enjoying summer camp at Enable Ireland Galway.

She has recently turned nine and will be starting in Rang a 3 at her school, Scoil Éinne, An Spidéal, this September.  Lucy’s older sister Orla (11) is going into Rang a 5 in the same school.

Lucy continues to be full of life and full of fun, with a busy schedule of school, activities, play dates and birthday parties.

She made her First Holy Communion in April of this year and we had a wonderful day of celebrations to mark her momentous milestone. And she did herself and us all so proud by walking to the altar in her walker with all of her classmates.

We had a big party at home for our family and friends and sun shone for Lucy’s special day.  Lucy danced and bounced all day to the music in the Disco Dome bouncy castle.

Some big news for our family was the arrival in February 2014 of Lucy and Orla’s little sister Annie.  Lucy is delighted not to be the youngest anymore!  Annie is a lively little lady with a head of blonde curls and she has kept us all very busy!

Lucy is a very patient big sister and has helped us to explain to Annie how she must be gentle with her, this has been more of a challenge as they are now the same size, despite the age gap.

Lucy has asked a lot of questions about Annie’s size and is now old enough to understand that her own small size is because of her fragile bones but that she can still strive to achieve all of her goals as a smaller person.

Lucy’s fragile bones have to be looked after to ensure they grow straighter and stronger, so she continues to have her infusions every three months of pamidronate, a bone-strengthening medicine, under the kind care of the staff at St Bernadette’s Paediatric Unit in University Hospital, Galway.

Lucy has also had several rodding surgeries, where a metal rod is inserted into her long bones to straighten and strengthen them. She attends Crumlin for these surgeries under the care of her wonderful orthopaedic surgeon Jacques Noel.

Lucy now has telescoping rods in both of her femurs, these grow with her as she grows. She is currently waiting to have the rods in her tibias replaced with telescoping rods too.

Lucy also had one of her arms rodded with a telescoping rod last November, this was done in Sheffield Children’s Hospital in the UK, where she was looked after by Mr James Fernandes, an excellent orthopaedic surgeon with a special interest in upper limb surgery.

These surgeries usually result in missed school time for Lucy, but she is very brave and works very hard with her rehabilitation and physiotherapy so she gets back to her friends at school as quickly as possible.  She also keeps up with her schoolwork when in hospital and recovering at home.

Lucy continues to receive Personal Assistant hours from Enable Ireland and she has been lucky enough to have had the same amazing PA for many years now.

We have a very close relationship with Lucy’s PA Fiona Boyle, and she provides Lucy with immeasurable help and support each week.

In the past two years, Fiona has supported Lucy in attending a local children’s art class after school every Tuesday.  She also brings Lucy to some of her appointments and often supports her at swimming lessons.

Hydrotherapy is a particularly important form of rehab for Lucy and helps her to recover from both fractures and surgeries.

We had a very special family holiday to Disneyland Paris last November, where Lucy got to meet a Disney Princess and all her favourite characters and enjoy so much fun and excitement all day long, at the parade every evening and at the fireworks each night.

Lucy’s favourite things are swimming, art, playdates with her friends, playing Minecraft with her sister and minder Amy, Sylvanian families, Ever After High and watching Full House on Netflix!

Lucy accesses her school-aged therapy services at Enable Ireland Galway, where she receives physiotherapy, occupational therapy, assistive technology support – including school staff liaison – and orthotics reviews.

The multidisciplinary team liaise with Lucy’s paediatricians and surgeons locally in UHG, in Crumlin and in Sheffield Children’s Hospital.  We are lucky to have a team that are so dedicated to their work in helping Lucy to reach her full potential.

Every day is a big adventure with Lucy.  She has a vivid imagination, a sparkling sense of humour and she loves to play most of all.

Lucy has taught us that life needn’t be so serious, she is definitely a girl that just wants to have fun!

■ Enable Ireland’s national fundraising and awareness week, No Limits, takes place all this week, running until Sunday and raising much needed funds for the Enable Ireland Galway service.   You can support by purchasing the Enable Ireland kite-branded merchandise at TK Maxx store, the Enable Ireland shop on High Street or from any of their on-street sellers.

CITY TRIBUNE

Designated drinking zones in city centre are ‘only solution’

Stephen Corrigan

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From this week’s Galway City Tribune – Properly staffed designated areas are the only solution to out-of-control outdoor boozing, according to the city councillor who drafted the city’s drinking bylaws.

Cllr Peter Keane told the Galway City Tribune it was likely that councillors would seek to ‘tweak’ the existing bylaws in the near future to find a long-term solution that would enable young people to ‘enjoy a drink outdoors in a safe and controlled environment’, not just now, but in the future too.

To avoid a repeat of scenes around Spanish Arch over recent weekends, the Fianna Fáil councillor said providing areas where the consumption of alcohol was allowed would enable Gardaí to properly enforce the drinking bylaws throughout the rest of the city.

He said he could ‘absolutely appreciate the concerns of residents’ in the Claddagh and elsewhere where anti-social behaviour including urinating in gardens ‘and worse’ had been a blight in recent weeks, but said with proper control, those worst excesses could be avoided.

In the first ten days of June, 83 on-the-spot fines were issued in the city for drinking in a public place.

And last Saturday night, Gardaí closed off the Quincentenary Bridge after hundreds of young people gathered on the carriageway and turned it into a “highly-dangerous road traffic risk situation”.

“Control is the key word for me. Gardaí don’t have the resources, nor do they have the appetite as far as I can see, to deal with the lack of control there has been during the recent good weather.
“If you were to designate, say for example the Spanish Arch or a green area in Salthill, where the bylaws didn’t apply, you could put a number of wardens in place there to control the situation. You could provide adequate bins and toilets, and enough bodies to staff it, and that would allow gardaí to police the bylaws elsewhere,” said Cllr Keane.
This is a shortened preview version of this article. To read the rest of the story and coverage of the re-opening of the hospitality sector and outdoor dining, see this week’s Galway City Tribune. You can buy a digital edition HERE.

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CITY TRIBUNE

Dispute simmers between businesses and Council over outdoor spaces

Dara Bradley

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From this week’s Galway City Tribune – Friction between businesses and local government over the reclaiming of public space to facilitate outside hospitality marred the beginning of the city’s ‘outdoor summer’.

Galway City Council has come under fire over its handling of plans by bars and restaurants to use street furniture to facilitate outdoor dining and drinking.

Most city watering holes and eateries resumed trading on Bank Holiday Monday – serving outdoors only – for the first time since Christmas, and the authorities reported that it was successful for the most part, although it needed time to ‘bed in’.

The city vintners’ group said its members with adequate outdoor space were happy to be back and described the mood as ‘euphoric’ in places.

But several outlets expressed disappointment with the Council.

In Eyre Square, the Skeff Late Bar and Kitchen claimed it had to cancel 200 advance bookings – up to 800 people – for this week, after the Council refused permission for “extended outdoor seating”.

On Middle Street, Sangria Tapas Restaurant lashed the Council for refusing it permission to use certain types of awning and windbreakers to facilitate outdoor dining. “Surely the powers that be can take time to support the industry that supports the city?” its proprietor said in a complaint to City Hall.

‘Back the West’, businesses criticised the Council for rowing back on promises to provide additional outdoor space on Dominick Street Lower and Dominick Street Upper, in time for outdoor hospitality’s reopening on June 7.
This is a shortened preview version of this article. To read the rest of the story, see this week’s Galway City Tribune. You can buy a digital edition HERE.

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CITY TRIBUNE

Council chief: ‘landlords see 4% rent increase cap as a target’

Enda Cunningham

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From this week’s Galway City Tribune – The Chief Executive of Galway City Council has said that the 4% annual cap on residential rent increases is now seen as a target by many landlords.

Brendan McGrath said that affordability continues to be a major problem for renters in the city and that an increasing number of people availing of the Housing Assistance Payment (HAP) scheme have to pay ‘top ups’ to their landlords.

The HAP scheme replaces rent supplement for those with a long-term housing need – the individual finds a private rented accommodation within specific rent caps and the Council pays the landlord directly. The tenant then pays a rent to the Council based on their weekly household income.

The maximum monthly rents under the scheme range from €330 for an adult in shared accommodation to €900 for a single parent or couple with three kids.

Based on their household size, tenants can also apply for a 20% extra ‘discretionary’ payment on top of their HAP payment.

However, Mr McGrath said many on the HAP scheme in Galway have to pay top ups to their landlords.

“Rents as a percentage of income is increasing and affordability remains a major problem for the city’s renters. The majority of HAP tenants require additional discretionary payments to assist them in maintaining their tenancies, particularly single person households.

“An increasing number of HAP tenants now have to pay top ups to their landlords even with the 20% extra HAP discretionary payment applied for their particular household size,” Mr McGrath said in a report to councillors.
This is a shortened preview version of this article. To read the rest of the story, see this week’s Galway City Tribune. You can buy a digital edition HERE.

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