Donegal mothers said they were satisfied with the reception they received last week from Minister of Health, Leo Varadkar.
But they also said they will keep up their campaign for better access to paediatric palliative care for Donegal families.
Seven Donegal mothers, each of them the mother of a child with a rare disease or a life-limiting illness, met the Minister for Health, Leo Varadkar, last Wednesday.
Two of the women in the delegation, Fiona Rodgers of Arranmore Island and Sharon Thompson of Moville, have already lost a child.
While in government buildings, the women also encountered the Taoiseach, Enda Kenny, who also listened to their appeal.
Both the Taoiseach and Minister Varadkar said their call for cross-border cooperation to allow parents access to paediatric hospice and respite care in the north was doable, the women said.
“It was a very productive meeting,” Gina Grant of Letterkenny said. The minister told them he had a busy night’s schedule ahead, but Gina said he met with them for more than 40 minutes “and listened to every parent who attended.”
“The things we asked for weren’t unreachable and we feel further meetings and further consultations will happen,” Gina said.
“We’re certain the minister for health will look into the points and proposals that were put in front of him,” she said. Gina’s five-year-old son Francis has mitochondrial disease.
The women also asked the minister for a community-based, paediatric palliative care nurse for Donegal and for outreach specialist clinics in the county, clinics they must now travel to Dublin with their sick children to attend, leaving in the dark, early hours of the morning for a morning appointment.
Children currently are discharged from early intervention teams at age six and the mothers asked for children with life-limiting illnesses to be able to stay with their therapist beyond that, eliminating the need to start over with a new team at that young age. They asked for private access to consultation rooms for children with immunity issues and to avail of health centres in the north for testing, rather than having to take their children to Dublin for those procedures.
“We’re not asking for a lot, really, in the grand scheme of things,” Sharon Thompson of Moville said.
“I think that the minister was very conscious of the group he was with, very sensitive that he had seven passionate and grieving mothers in front of him,” she said. Sharon’s daughter, Victoria, died at nine months of age from leukodystrophy in June 2012. Sharon and her husband had spent months with Victoria at the Lauralynn Children’s Hospice in Dublin, but that facility, so far from Donegal, is the only paediatric hospice in the country.
Sharon said the Taoiseach was “very engaged and listened to everyone’s story. I think he nearly hugged us all”. She said Mr. Kenny was keen for the women to follow up with him and took the documentation that they brought.
Gina said the parents will again meet with Joe McHugh, minister of state for the Gaeltacht, later this month and said he is organising more meetings to help them in their campaign.
“We’re so grateful to have the minister’s help and aid in these matters,” Gina said.