A group of women from the North West are meeting with Health Minister Leo Varadkar later this afternoon to discuss the lack of Palliative paediatric care in that part of the country.
One of those women is Aisling Nibbs, whose son Óran lives with Mitochondrial Disease.
Aisling spoke to Jonathan Healy today about the difficulties that are facing the family and the short time that Óran has left. The family have to travel Dublin regularly for care for their son.
Óran has quite a lot of seizures.
"I'm not asking the Minister for an awful lot. All of the proposals we are bringing to him today are things that are well within his grasp.
"They're not going to cost a lot of money.
"We just need him to listen."
Aisling said she hopes that this will be done in enough time to help Óran: "I could quite easily sit back and not think about this. I want to be a voice for my son.
"We want to be a voice for the children that come after Óran.
"My son is five years old but he deserves to die with dignity."
Her meeting with the Minister is this evening.
You can listen to the full interview here:
