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Enable Ireland helps brave Galway girl achieve her ambitions
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.
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.
Significant state investment is required to address ‘shocking’ inequalities that leave cancer patients in the West at greater risk of succumbing to the disease.
A meeting of Regional Health Forum West heard that survival rates for breast, lung and colorectal cancers than the national average, and with the most deprived quintile of the population, the West’s residents faced poorer outcomes from a cancer diagnosis.
For breast cancer patients, the five-year survival rate was 80% in the West versus 85% nationally; for lung cancer patients it was 16.7% in the west against a 19.5% national survival rate; and in the West’s colorectal cancer patients, there was a 62.6% survival rate where the national average was 63.1%.
These startling statistics were provided in answer to a question from Ballinasloe-based Cllr Evelyn Parsons (Ind) who said it was yet another reminder that cancer treatment infrastructure in the West was in dire need of improvement.
“The situation is pretty stark. In the Western Regional Health Forum area, we have the highest incidence of deprivation and the highest health inequalities because of that – we have the highest incidences of cancer nationally because of that,” said Cllr Parsons, who is also a general practitioner.
In details provided by CEO of Saolta Health Care Group, which operates Galway’s hospitals, it was stated that a number of factors were impacting on patient outcomes.
Get the full story in this week’s Connacht Tribune, on sale in shops now, or you can download the digital edition from www.connachttribune.ie. You can also download our Connacht Tribune App from Apple’s App Store or get the Android Version from Google Play.
On the eve of completing his 150th marathon, an odyssey that has taken him across 53 countries, Loughrea’s Marathon Man has announced that he is planning to hang up his running shoes.
But not before Jarlath Fitzgerald completes another ten races, making it 160 marathons on the occasion of his 60th birthday.
“I want to draw the line in 2026. I turn 57 in October and when I reach 60 it’s the finishing line. The longer races are taking it out of me. I did 20 miles there two weeks ago and didn’t feel good. It’s getting harder,” he reveals.
“I’ve arthritis in both hips and there’s wear and tear in the knees.”
We speak as he is about to head out for a run before his shift in Supervalu Loughrea. Despite his physical complaints, he still clocks up 30 miles every second week and generally runs four days a week.
Jarlath receives injections to his left hip to keep the pain at bay while running on the road.
To give his joints a break, during the winter he runs cross country and often does a five-mile trek around Kylebrack Wood.
He is planning on running his 150th marathon in Cork on June 4, where a group of 20 made up of work colleagues, friends and running mates from Loughrea Athletics Club will join him.
Some are doing the 10k, others are doing the half marathon, but all will be there on the finishing line to cheer him on in the phenomenal achievement.
Get the full story in this week’s Connacht Tribune, on sale in shops now, or you can download the digital edition from www.connachttribune.ie. You can also download our Connacht Tribune App from Apple’s App Store or get the Android Version from Google Play.
From the Galway City Tribune – An impassioned plea for a ‘masterplan’ that would guide Galway City into the future has been made in the Dáil. Galway West TD Catherine Connolly stated this week that there needed to be an all-inclusive approach with “vision and leadership” in order to build a sustainable city.
Deputy Connolly spoke at length at the crisis surrounding traffic and housing in Galway city and said that not all of the blame could be laid at the door of the local authority.
She said that her preference would be the provision of light rail as the main form of public transport, but that this would have to be driven by the government.
“I sat on the local council for 17 years and despaired at all of the solutions going down one road, metaphorically and literally. In 2005 we put Park & Ride into the development plan, but that has not been rolled out. A 2016 transport strategy was outdated at the time and still has not been updated.
“Due to the housing crisis in the city, a task force was set up in 2019. Not a single report or analysis has been published on the cause of the crisis,” added Deputy Connolly.
She then referred to a report from the Land Development Agency (LDA) that identified lands suitable for the provision of housing. But she said that two-thirds of these had significant problems and a large portion was in Merlin Park University Hospital which, she said, would never have housing built on it.
In response, Minister Simon Harris spoke of the continuing job investment in the city and also in higher education, which is his portfolio.
But turning his attention to traffic congestion, he accepted that there were “real issues” when it came to transport, mobility and accessibility around Galway.
“We share the view that we need a Park & Ride facility and I understand there are also Bus Connects plans.
“I also suggest that the City Council reflect on her comments. I am proud to be in a Government that is providing unparalleled levels of investment to local authorities and unparalleled opportunities for local authorities to draw down,” he said.
Then Minister Harris referred to the controversial Galway City Outer Ring Road which he said was “struck down by An Bord Pleanála”, despite a lot of energy having been put into that project.
However, Deputy Connolly picked up on this and pointed out that An Bord Pleanála did not say ‘No’ to the ring road.
“The High Court said ‘No’ to the ring road because An Bord Pleanála acknowledged it failed utterly to consider climate change and our climate change obligations.
“That tells us something about An Bord Pleanála and the management that submitted such a plan.”
In the end, Minister Harris agreed that there needed to be a masterplan for Galway City.
“I suggest it is for the local authority to come up with a vision and then work with the Government to try to fund and implement that.”
Families queue up for school’s offer of free house
West has lower cancer survival rates than rest
Galway minors continue to lay waste to all opponents
Gardaí and IFA issue a joint appeal on summer road safety
Marathon Man plans to call a halt – but not before he hits 160 races
