How wonder drug saved

my little girl

KAREN O’Flaherty hugs her little girl Rose (left) and celebrates the wonder drug Spinraza that has saved her baby’s life.

Two-year-old Rose was born with a rare genetic disease, Spinal Muscular Atrophy (SMA), and wasn’t expected to survive to her second birthday.

However, Rose’s life has been transformed by the wonder drug Spinraza, following a trial lasting a year.

So successful has been the impact of the drug on the wellbeing of the little girl from Ballymacelligott that the government has now decided to approve the miracle treatment for all of the other 24 children in Ireland with the same condition.

What happened in Kerry this week

‘Is Feidir Linn’ - the message inscribed on the buddy bench that stands testimony to the friendship that blossomed between a Special Needs Assistant and a little girl who is just about to complete her primary education, despite having a life changing rare disease called Ataxia-Telangiectasia.

 

Sally-Ann Leahy from Causeway plans to make the most of being the Kerry Rose - because she understands better than most that life is short. Sally-Ann was only 14 and in the middle of her Junior Cert year when her mother, Mary, passed away suddenly - a week before Christmas.  Sally Ann says: “There was never time to say goodbye.”

 

It’s a grand finale for Lispole native Ann Griffin as she retires for a well earned rest after 58 years of outstanding service at the Grand Hotel in Tralee.

 

Thirty one year old Paddy O’Dwyer has had to undergo not one but two kidney replacements after being struck ‘out of the blue’ by a kidney disease back in 2012. Despite all this he considers himself one of the lucky ones - and that many are not so fortunate, having to wait up to four or five years on the donor list.

 

Finally, a book containing the answers to almost every debated aspect of Kerry football has hit the shops. In Kerry Abú, Kerry’s Eye Sports Editor Sylvester Hennessy has documented it all: the great triumphs and tribulations of 134 years of Kerry football.

Hey buddy have a seat!

An eight-year friendship that blossomed between a little girl and her Special Needs Assistant will be permanently remembered in Tralee - after her family donated a special buddy bench to her school.

Aine Baker has been described as a “second mother” to 12-year-old Érin O’Sullivan, who finishes her primary education at Scoil Eoin Balloonagh this month.

Aine helped ensure Érin progressed through mainstream education, despite having a rare disease called Ataxia-Telangiectasia (AT).

And now, as a mark of respect to both the school and Aine, the O’Sullivan family have donated a ‘buddy bench’ that can be used by all pupils at the school - built by Érin’s grandfather Pat Cronin.

Great Gaisce!

A KILLARNEY teenager endured four days of army assault courses, hiking, kayaking, rock climbing and swimming with the Defence Forces and all to earn her Gaisce President’s Award.

Aislinn Burke (16), who has just completed Transition Year at St Brigid’s Secondary School, says she feels a wonderful sense of achievement from having stuck it out and made some great friends from all over the country.

She was one of 30 teenagers aged 15 to 17 who were put through their paces at Custume Barracks in Athlone and the Curragh in Co. Kildare by personnel from the 2nd Brigade Artillery Regiment of the Defence Forces, who led the Gaisce participants through a range of incredible adventure challenges, training and team-building exercises.

‘Organ donor saved my life’

A kidney transplant patient whose life was saved by the generosity of an organ donor says he was one of the lucky ones - and that many are not so fortunate.

Paddy O’Dwyer (31), the nephew of Joe O’Dwyer who runs O’Dwyer’s Mace in Camp, was struck ‘out of the blue’ by a kidney disease called IGA Nephropathy in 2012 that progressively deteriorated until he required a replacement.

While on dialysis, his loving mother Nora Flynn donated her kidney hoping to relieve him of his debilitating illness.

Unfortunately, clotting occurred in the replacement kidney post-surgery and it was surgically removed after just four days later.

However, Paddy was counting his lucky stars as a suitable donor became available shortly afterwards, that proved to be a perfect match.

Running challenge for the hospice

The challenge to complete 26 miles of running across 26 counties in just 26 hours will be undertaken by thirteen brave Kerry fundraisers this month in memory of Killarney native Patsy O’Keeffe who sadly passed away from cancer last year.

Organised by Niamh O’Carroll and Andrea Thornton, the challenge seeks to raise much-needed funds for the Kerry Hospice Foundation who provide expert care and comfort to cancer patients.

Kicking off at 10am on Friday June 21 in Mitchelstown, Co. Cork, the runners will attempt the mammoth task in hopes of raising at least €2,000 .

Speaking to Kerry’s Eye, Andrea is asking anyone with an interest to come along to one of their 26 starting points across the country.

“In one night the amount raised jumped from around €800 to €1,200 and while our aim is €2,000, the more we can collect the better,” said Andrea.

Social Spin battles rural isolation

A car-pool scheme being piloted by volunteers in Causeway is proving a huge success in the battle against rural decline and isolation.

In a bid to get people socialising more, local publicans have introduced the Social Spin and are now planning to purchase a seven-seater Ford Galaxy to bring people to the village from within a five mile radius.

With thirty volunteers needed to drive locals to and from their favourite watering hole on a nightly basis, those who feel abandoned due to strict driving laws and rural isolation are now out mingling once more.

Speaking to Kerry’s Eye, John Fitzgerald of the Forge Pub said that the community has rallied together to make the service possible.

Clean sweep for Tralee and Killarney

TWO OF the cleanest towns in Europe are in Kerry.

Killarney and Tralee are, according to the annual Irish Business Against Litter (IBAL) survey of Ireland’s cleanest main towns, cleaner than ‘European norms’.

In a survey of 40 main towns and cities, Killarney ranked third and Tralee ranked fifth in the 14 towns and cities that made this grade of cleanliness.

Their rankings place them as principal tourist towns and cities that are cleaner than ever and registering record levels of cleanliness.

Tralee is one of three towns to enjoy their best-ever showings in the survey, along with Portlaoise and Letterkenny.

Last year, it was ranked 30th in the annual survey.

This’ll be some sight - bar NUN!

Well holy God! Tralee Town Park will be a sight to behold on Saturday June 15 as thousands gather to break a Guinness World Record for the largest gathering of people dressed as nuns.

As part of this year’s Féile na mBláth celebrations, at least 1,500 nun look-alikes will need to present themselves at the park from 6.30pm for what is expected to be a great evening of fun and excitement.

Organised by Tralee Rowing Club in conjunction with Pieta House, participants will be treated to music, entertainment and food stalls during the event along with spot prizes for Best Bearded Nun, Funniest Makeup and Best Sister Act.

“Tralee Rowing Club recognise the fact that sport is so important in the lives of young people and therefore want to give back to Pieta House in recognition of all the fantastic work, care and help they give to young people” said acting PRO Eileen Nagle.

They’re off!

It was a fantastic spectacle as dozens of horses and ponies raced on the sandy beaches of Ballybunion.

Once the track was set up on Saturday morning, jockeys were busy getting used to their surroundings before the first of seven horse races got underway.

Traversing both the Men’s and Ladies Beaches, onlookers were treated to the picturesque sight of horses racing in the shadow of the 16th-century castle.

Organiser John Farrell said it was a great family event that brought many visitors to the town.

Causeway ballroom gets new lease of life

Community activists are breathing new life into the old Shannon Ballroom in Causeway as plans to reopen the building as a cultural and social community hub move forward.

Causeway Community Action Group (CCAG) are to purchase the ballroom that once played host to big showband-era names such as Maurice Mulcahy, Butch Moore and Mick Delahunty and repurpose the site as a community hall and playground.

Costing an estimated €80,000, locals are busy preparing fundraisers in the community and have established a GoFundMe page to help cover the cost.

Group Chairwoman Fiona Casey said: “This offers the people of Causeway a huge opportunity as the building will be fully owned by the community and available to be used by the organisations within the parish with long-term plans to be put in place to sustain its future use.

Sally-Ann flies Kerry flag in Rose finals

ONLY ONE could win but the 18 young women who took part in the Kerry Rose selection got a taste of what it’s like to be a Rose in a process that mimicked the Rose of Tralee International Festival - but Causeway’s Sally-Ann Leahy is the one who’ll wear the sash.

The 27-year-old Home Economics teacher, who represented the Chernobyl Children’s Fund, is the 60th Kerry Rose and will represent The Kingdom at this year’s festival which runs from August 23 to August 27.

As she represents the host county, the Kerry Rose automatically qualifies for the final and will be one of 32 Roses representing communities all over the globe to be interviewed live on stage at The Dome.

Keep the Head and run a half marathon

10k Run will kick off on Saturday June 15 at 11am to raise funds for a number of local charities.

Since its inception in 2010, the ‘Half on the Head’ has morphed into a prominent date on the Irish running circuit with record numbers of overseas participants due to partake in this year’s event.

Groups from Canada, the USA and Europe will be taking part and experiencing the stunning scenery and seascapes that North Kerry has to offer.

Speaking to Kerry’s Eye, Mick Harkin, who is organising the race along with Marian Godley, says people should register on the ‘Half on the Head’ website to secure a place.