Date Published: 03-Jan-2013
Six years ago, patsy and Sarah McDonagh, like most of their work colleagues in Boston Scientific had no idea of how the rare condition Epidermolysis Bullosa affected people who suffered from it.
But when their son Gerard was born five years ago, the McDonaghs went on a steep learning curve.
Gerard was only three days old when he got his first blister – a symptom of the condition, which affects collagen production in the body and means that even small cuts cannot heal.
But because EB is so rare – affecting one in 18,000 babies – it took two months for a diagnosis. The doctors dealing with him in Galway had never seen a case of it, recalls Sarah, but one medic who recognised the symptoms, suggested that he be tested for it in Crumlin Children’s Hospital, where EB was confirmed.
Three hundred families in Ireland are affected by EB, the McDonaghs explain. It’s genetic but neither Patsy nor Sarah are carriers. Gerard created the gene, but why that happened, nobody is sure. His younger sister, Kayla is not affected.
The McDonaghs, who live in the city suburb of Roscam, are relaxed but alert parents to five-year-old Gerard, a lively, intelligent young lad, and 18-month-old Kayla, a mischievous, determined toddler. Because so few families are affected by EB the public are generally unaware of this condition, says Sarah.
“Nobody seems to know about it. Awareness has increased in the past few years, but it’s still not well known.”
Until Gerard was diagnosed, they had never heard of it either. Gerard’s EB is caused by lack of collagen in the skin, which is vital to protect us from minor bangs and falls.
That means that what would be an ordinary cut for most of us, is like a burn to Gerard. His skin blisters and peels and, when he falls, the level of pain can be the same as having a burn.
There are two types of falls, Patsy explains. One causes blistering and the other causes peelback of the skin. Gerard gets blistering almost every day – “it’s a rare day he doesn’t,” says Patsy – but he also goes through phases of having bad falls, which cause peelback. They apply cornflour to dry it out and then dress it and give painkillers.
Some people with EB are affected all over their bodies – with Gerard it’s his knees and elbows and his hands and feet. Small blisters are visible on his hands but, say his parents, as he’s getting older and gaining more co-ordination, he falls less.
However, when he was a baby, banging his hands off the cot was a big problem. Then when he started crawling and walking, it was particularly tough. But his parents were determined not to wrap him in cotton wool.
“You have to be as invisible as you can be, while still watching,” says Patsy.
“And we’d try and see things before they’d happen,” dds Sarah, pointing to Kayla’s baby chair, which is in the middle of the sitting room. A chair couldn’t have been left casually around like that when Gerard was small, in case he bumped into it. Likewise there were no coffee tables or anything with sharp edges. The sofa in their house is made of soft fabric and has rounded corners, to minimise any accidents.
When Gerard was a tiny baby Patsy and Sarah had to lift and hold him in certain ways so as not to cause burning or blistering to his skin. For instance, holding him under his arms to lift him – as is usual with a baby – wasn’t on, as that was a sensitive area.
Bathing also required care. There was no rubbing with a towel as you’d usually do – Gerard had to be patted dry. They lined the bath with foam supports so he could splash about without cutting and blistering himself,
Pre-empting any injuries remains paramount, so these days Gerard wears gloves when he’s going out to play with friends – even on the warmest days. He also wears bandages on his knees and elbows to minimise any impact to those areas. Games are generally played on grass for the same reason.
At present there is no preventative treatment for EB, but there are different tests going on.
These include clinical trials, the most exciting of which are fibroblast injections. In the case of an area that is repeatedly affected by blisters or burns, collagen is injected into it when it’s not affected by injury. So far the results have been promising, but Patsy and Sarah stress that it’s early days.
Gerard is a regular visitor to Crumlin Children’s Hospital for ongoing testing and, says Sarah, “they are brilliant there”.
After his initial diagnosis, Crumlin put them in touch with DEBRA and they contacted the organisation after a few months.
Now a support worker from DEBRA visits every couple of months and there is a lot of moral support, for instance, being put in touch with parents of other kids. There are yearly meetings in Dublin where “you might meet people and their children and they know what you are going through”, says Sarah.
For more see this week’s Tribune
The way we were – Protecting archives of our past
People’s living conditions less than 100 years ago were frightening. We have come a long way. We talk about water charges today, but back then the local District Councils were erecting pumps for local communities and the lovely town of Mountbellew, according to Council minutes, had open sewers,” says Galway County Council archivist Patria McWalter.
Patria believes we “need to take pride in our history, and we should take the same pride in our historical records as we do in our built heritage”. When you see the wealth of material in her care, this belief makes sense.
She is in charge of caring for the rich collection of administrative records owned by Galway County Council and says “these records are as much part of our history as the Rock of Cashel is. They document our lives and our ancestors’ lives. And nobody can plan for the future unless you learn from the past, what worked and what didn’t”.
Archivists and librarians are often unfairly regarded as being dry, academic types, but that’s certainly not true of Patria. Her enthusiasm is infectious as she turns the pages of several minute books from Galway’s Rural District Councils, all of them at least 100 years old.
Part of her role involved cataloguing all the records of the Councils – Ballinasloe, Clifden, Galway, Gort, Loughrea, Mountbellew, Portumna and Tuam. These records mostly consisted of minutes of various meetings.
When she was cataloguing them she realised their worth to local historians and researchers, so she decided to compile a guide to their content. The result is For the Record: The Archives of Galway’s Rural District Councils, which will be a valuable asset to anybody with an interest in history.
Many representatives on these Councils were local personalities and several were arrested during the political upheaval of the era, she explains.
And, ushering in a new era in history, women were allowed to sit on these Rural District Councils – at the time they were not allowed to sit on County Councils.
All of this information is included in Patria’s introductory essay to the attractively produced A4 size guide, which gives a glimpse into how these Rural Councils operated and the way political thinking changed in Ireland during a short 26-year period. In the early 1900s, these Councils supported Home Rule, but by 1920, they were calling for full independence and refusing to recognise the British administration.
“I love the tone,” says Patria of the minutes from meetings. “The language was very emotive.”
That was certainly true of the Gort Rural District Council. At a meeting in 1907, following riots in Dublin at the premiere of JM Synge’s play, The Playboy of the Western World the councillors’ response was vehement. They recorded their decision to “protest most emphatically against the libellous comedy, The Playboy of the Western World, that was belched forth during the past week in the Abbey Theatre, Dublin, under the fostering care of Lady Gregory and Mr Yeats. We congratulate the good people of Dublin in howling down the gross buffoonery and immoral suggestions that are scattered throughout this scandalous performance.
For more from the archives see this week’s Tribunes here
Moment of truth for Galway U21s
Date Published: 01-May-2013
FOUR matches, four victories, one after extra-time, a Connacht title, four goals and 56 points scored, four goals and 30 points conceded, a heap of wides from their opponents, sinews strained, buckets of sweat and blood spilled.
It’s been one hell of a roller coaster campaign for the Galway U21 footballers but all that will be forgotten come 7pm on Saturday evening at the Gaelic Grounds, Limerick when they cross swords with Cork for the honour of being crowned Cadbury’s All-Ireland champions.
Six weeks ago as Galway set out on their 2013 U21 journey against Sligo in Tuam, the May Bank Holiday weekend final was always the target. They took each game as it came and now it has come down to this – 60 minutes of football to decide who the best U21 team in the land is.
And while there were times along the way when Alan Flynn’s charges looked like they’d fall off the wagon, against Mayo, against Roscommon and again against Kildare, Galway showed resilience and mental strength to time and again bounce back and defy the odds. Often down, never out. It is that perseverance that will stand to Galway in the heat of battle this weekend.
Cork has won an All-Ireland at this grade more times than any other county since the competition’s inception in the 1960s. The most recent of their 11 titles was won in 2009, and they’ve claimed a three-in-a-row of Munster titles with a defeat of Tipperary last month.
Interestingly, five players – Alan Cronin, Jamie Wall, John O’Rourke, Tom Clancy and Damien Cahalene, the son of former inter-county player Niall – that are expected to start this Saturday lined out in each of the last three Munster finals, so they have experience of playing in the pressure cauldrons.
Galway aren’t as experienced. True, a couple of players already have a All-Ireland medal from 2011 – a year Galway beat Cork in the semi-final – but there are a lot of young guns in the panel. Of the squad of 33, about 19 of them are young enough to play U21 next year as well, while eight or nine of the starting 15 will be eligible next year, although you wouldn’t think it given the levelheadedness they’ve displayed throughout the past six weeks.
Galway had plenty to spare over a hapless Sligo outfit in Tuam the first day out, winning by 16 points, which didn’t flatter them, but old rivals Mayo in the following game at the same venue was a different story. After a tense and tight hour of fare, Galway took the spoils after showing immense character to dig it out by two points in a dogfight, 0-9 to 0-7.
Fighting qualities were needed again in the Connacht final in Hyde Park against Roscommon – Galway were minutes from being knocked out of the championship when a heroic comeback, three points in as many minutes from Kilkerrin/Clonberne’s Shane Walsh, rescued extra-time, a period which Galway never looked like losing.
The Tribesmen took their chances when they presented themselves, a trait that also saw them knock-out Kieran McGeeney’s highly rated and much fancied Kildare outfit in a thriller at Tullamore a fortnight ago.
The Lilywhites were wasteful, true, but that’s their problem, and Galway just had too much natural footballing class to take their chances and emerge with a deserved five points, 2-10 to 2-5 victory, despite 19 wides from the vanquished.
For more, read this week’s Connacht Tribune.
GalwayÕs U-13 and U-16 sides both through to national finals
Date Published: 14-May-2013
It proved to be a very successful weekend for Galway Schoolboy soccer as two representative sides qualified for national finals at the end of the month.
It was drama all the way in Eamonn Deacy Park on Saturday afternoon as the U-13 side drew 1-1 with the Midlands League, but came through the dreaded penalty shootout to prevail by 5-4.
Meanwhile the U-16 side had to travel to Cork, where they emerged 2-1 winners following a very impressive performance. For the second game in succession, it was the goals of the Connolly brothers that proved crucial to both team’s success.
Andrew lines out with the U-16 side and he notched both their scores in terrific away win, while younger brother Aaron was on target for the U-13 side and also converted the winning spot kick.
Mervue United captured a third consecutive Connacht Youth Cup with an impressive 4-1 win over Castlebar Celtic in Milebush on Saturday.
SFAI U-13 INTER LEAGUE SEMI FINAL
Galway League 1
Midlands League 1
(AET-Galway won 5-4 on pens)
A low scoring contest might indicate few chances, but one has to credit two outstanding defences whose splendid covering and marshalling of the front men was a joy to watch.
Galway’s Oisin McDonagh and Adam Rooney never put a foot wrong in central defence, while full-backs Byron Lydon and Matthew Tierney were equally efficient in defence, and getting forward with regular forays.
Further afield, they matched the visitors in terms of intensity and creativity and in the second half in particular should have pulled away from a Midlands side that won the U-12 national title last year.
The visitors certainly offered the greater attacking threat in the opening half, but found home custodian Mark Greaney in top form. Galway’s best chance fell to Joshua Quinlivan, but he pulled an effort wide of the target.
For more, read this week’s Connacht Sentinel.