From left, Edward Grant; Finian McGrath, TD, minister of state for disability issues; and Ashling Nibbs and Gina Grant of Our Children's Voice.
Two Donegal mothers were in Dublin this week to speak for children with life-limiting conditions or high medical/physical needs.
This was not the first time members of the group, Our Children’s Voice, had travelled to Dublin to make their case for respite services and the need for end-of-life care for children in Donegal.
But the parents said there has not been progress on their demands in the three years since a group of Donegal mothers formed Our Children’s Voice.
Gina Grant of Our Children’s Voice said the elected representatives she and Ashling Nibbs met in Dublin on Wednesday offered some good suggestions, but said she “feels sad this is still going on and sad we’re fighting the same fight.
“We’re not asking for the world to change,” Gina said. “We’re just asking for communication, for proper procedures and proper support for children with life-limiting conditions or high medical/physical needs.”
In a series of meetings on Wednesday, Gina and Ashling met with party leaders Gerry Adams, Sinn Féin TD, and Micheál Martin, Fianna Fáil TD, and members of their parties; and with Finian McGrath, TD, minister of state with special responsibility for disability.
From left, Sinn Féin Sen. Pádraig MacLochlainn; Edward Grant; Gina Grant of Our Children's Voice; Gerry Adams, TD, Sinn Féin president; Ashling Nibbs of Our Children's Voice; Louise O'Reilly, TD and Sinn Féin health spokesperson; and Pearse Doherty, Sinn Féin TD.
Our Children’s Voice had also brought their campaign to the national media in recent years. In print and broadcast interviews, Ashling had spoken of having to treat her son, Órán, on the side of the road when she and her husband would bring him to Dublin hospitals for appointments and treatments that were not available closer to home. Órán, who had mitochondrial disease, passed away in January of this year. He was 7 years old.
Members of Our Children’s Voice have met with ministers before as well - Gina had spoken briefly with James Reilly, TD, when he was minister of health, before the group formed; Our Children’s Voice met in Dublin and in Donegal with then-Health Minister Leo Varadkar, TD; and they met with Simon Harris, TD, minister for health, during the minister’s visit to Donegal in December.
It was Minister Harris who had requested this week’s follow-up meeting, but the minister sent apologies and Minister McGrath met the delegation in his absence.
Gina’s son, Edward Grant, also spoke at the meetings of the difficulties siblings and parents of children with life-limiting conditions or high medical/physical needs face in the absence of reliable supports.
“This affects the whole family,” Gina said.
From left, Billy Kelleher, TD and Fianna Fáil spokesperson on health; Edward Grant; Pat "the Cope" Gallagher, Fianna Fáil TD; Gina Grant and Ashling Nibbs of Our Children's Voice; Micheál Martin, TD, Fianna Fáil leader; and Charlie McConalogue, Fianna Fáil TD.
The women also brought with them submissions from parents in Donegal who addressed the mental and physical toll that comes from feeling unsupported when caring for a child with high complex needs.
In a statement issued after the meetings, Ashling and Gina said, “We feel we have to give a voice to the voiceless; children with high medical/physical complex needs and their families are too often ignored.”