MEMBERS of Dundalk’s 27 Infantry Battalion took part in the ‘Niamh’s Miles for Smiles Challenge’ in a bid to raise much needed funds for Temple Street Hospital, all in memory of Niamh Ní Dhoibhilín from Limerick.
On the 10 October 2012, 95 members of the Defence Forces took part in a charity walk/run from Slieve Foy Forest Park, Omeath to Glenmore.
This year’s run was won by local man Ciaran Gormley who is a medic attached to the 27 Battalion in a time of 30 minutes and one second.
Niamh was born with Neurofibromatosis (NF) – an extremely rare and ill-understood condition at the time – and she spent her life beating the odds.
Her condition was so rare that there was no test for it at first. As she grew up, however, the truth began to dawn on others. This was a condition that was going to test the skills of the most expert of specialists and that, would, in the end, defeat them.
She had a life to live and she was determined to do just that. She crammed more into her fourteen and a half years than most of us will do in our full ‘four score and ten’.
Every new set-back was only another hurdle to overcome, but it was not a restriction.
Niamh swam when doctors said she should not, she rode pillion on Harley-Davidson motorbikes when attached to a ventilator. Her parents used to watch on in horror but her smile made it all worthwhile.
As her condition worsened, she underwent a series of unimaginable operations. Her condition was attacking her body, growing lumps on the nerve-endings of her little body that would, if not corrected, squeeze the life out of her by crushing her vital organs.
She had part of her tongue removed and could not talk – so she used sign language and wrote, all the time with her usual good humour, becoming the darling of the Intensive Care Unit of ‘her’ hospital – Temple Street.
She had operations on her spine to remove Neurofibromas and nearly died from complications. She had a drain put into her head to remove fluid and reduce potentially lethal swelling on her brain – but she strived to survive and enjoyed her birthday party in the hospital bed, insisting that the nurses join in!
Because of all the operations she underwent, Niamh’s bones never hardened the way they should, and she eventually had to go to a specialist in London for an extremely rare operation which required two ribs to be removed and welded to her spine to stop it bending and possibly, snapping her spinal chord.
When potentially fatal post-op complications could not be treated there, Niamh was flown back to ‘her’ hospital again – the only place she could be saved – and again they performed a miracle, as Niamh knew they would. They even gave her ice-cream!
Throughout all this Niamh never complained, never asked ‘why me?”
Niamh enjoyed life, and made the most of it. She insisted on going to school, even though wheelchair-bound by now, and did not want a classroom assistant. She taught her best friends how to change her tracheotomy tube in an emergency so that she could get on with things independent of her family,
During her last months when her condition deteriorated and entered its final phase, Niamh was completely hospitalised. Now terminally ill (she did not know this), she refused to let it get her down. Instead, she turned her ward into an art commune. Now she had artists in different disciplines – painting, sculpture, photography etc. – come to her and she spent her remaining days working with them to create works of art in her own inimitable style. Selling them on at auction to raise much needed funds for ‘her’ hospital, Temple Street..
Niamh had identified some needs of the hospital and was determined to help supply them. For example one item she wanted was a patient hoist so that children like her could be lifted out of bed for a bath. She bought one from the proceeds of this auction and then presented a cheque for the remainder to the hospital.
Unfortunately Niamh sadly died on October 15th 2003, while organising another fundraiser, at just 14½ years of age.
As a result, fundraising event continue in Niamh’s name with her mother Milla overseeing the events. This year €930 was raised and handed over to Milla Ní Dhoibhilín in Aiken Barracks on Thursday last.