A Co Donegal mother is meeting the Health Minister Leo Varadkar this evening to ask him to allow her son to die with dignity.
Five-year-old Oran Nibbs has mitochondrial disease, a rare genetic condition for which there is no cure.
He 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.
His mother Aisling and other parents of sick children in the Donegal area are lobbying for their children to have treatment in Belfast instead.
On the fund-raising website that tells his story, it is explained that Órán "is unable to sit unsupported; he cannot crawl, walk, feed himself or communicate his needs".
The family also set up a facebook page to update friends and fundraisers.
Aisling described the journey to and from Dublin with her son - who has frequent seizures - as traumatic and degrading.
"My son is five years old. He deserves to die with dignity and to spend the time he has here happy and contented," she said, " and not being dragged from pillar to post and standing at the side of the road at 6 o'clock in the morning.
"Our children are expected to endure (this journey) every single week of the year for the very short time they have on this earth…You wouldn’t do it to a dog."
Aisling said she and her husband regularly have to stop to treat Oran on the side of the road while travelling to Dublin.
"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."