The mother of a child with Mitochondrial Disease is welcoming news that a Children's Outreach Nurse will be appointed in county Donegal this year.

Minister of State at the Department of Health, Kathleen Lynch, confirmed the announcement this week.

This is after a group of women from the North West met with Health Minister Leo Varadkar two weeks ago 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 were facing the family and the short time that Óran has left. The family have to travel Dublin regularly for care for their son.

Today, she spoke to John Keogh on Lunchtime about the news and said she was delighted by the news but she is still determined she will fight on to secure the other issues she has proposed to the minister like cross-border care.

She was asked whether she thought it was media pressure that led to this announcement among others: "It is very easy to be cynical.

"I didn't particularly want to tell my story or Óran's story to everybody. It's not an easy to do.

"All of us are living daily with the prospect of facing losing our children, there's nothing worse in this life than that."

"It's when you concentrate and you have to literally speak out and when you have to verbalise the reality of what you're facing.

"Our voices deserve to be heard and in the case of our children, our children have no voice. My son is non-verbal, he will never speak so I have to be his voice."

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Originally posted at 13.04