Updated: 23/01/17 : 05:58:31
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Little hero Óran Nibbs (7) loses battle for life

There was widespread shock and sadness on Friday as the news emerged that Óran Nibbs, having fought a battle for life, the seven-year-old died.

Óran had lived with his family in Letterkenny though both parents, Aisling and Colm, are from Sligo town originally.

Little Óran was diagnosed with the life-limiting condition Mitochondrial disease at an early age. He was unable to sit unsupported, could not crawl, walk, feed himself or communicate his needs.

In order that Órán would have the best life possible, people rallied round to help raise funds.

This generosity began with family and friends but quickly extended to include people, organisations and clubs who did not know Órán but were moved by his struggle and courage.

The money people raised helped his family to care for their precious little boy. It also allowed them to take him to the UK and the US for treatment which improved his quality of life.

Sadly however, Órán’s short life came to heart-breaking end on Friday.

His mother Aisling had met the then health minister Leo Varadkar in 2015 to ask him to allow her son to die with dignity.

Órán has regular appointments at Temple Street Hospital and the Laura Lynn Children's Hospice - both in Dublin, and eight-hour round trip from their home in Donegal.

Aisling and other parents of sick children in the Donegal lobbied for their children to have treatment in Belfast instead.

The desperate mother described to the minister the journey to and from Dublin with her son - who has frequent seizures - as 'traumatic and degrading'.

She said at the time, "If Oran has an appointment at, say, 9am in Temple Street for a neurology clinic, I have to wake him at 4am," she said. "We have often stood at the side of the road trying to administer oxygen and an anti-seizure drug in what is essentially a ditch."

Órán's remains reposed at his home in Trentagh, Letterkenny on Saturday and Sunday.

The funeral will leave the house on this morning, Monday at 10.30 am, for Requiem Mass at 11.00 am in The Church of the Irish Martyrs, Letterkenny. Órán will then be laid to rest in Carrigans Cemetery, Maugherow, Co Sligo.