Mother to meet Leo Varadkar: 'My boy (5) deserves to die with dignity'
The mother of a five-year old boy who has an incurable rare illness will meet Health Minister Leo Varadkar today to plead with him to allow her child to "die with dignity".
Ashling Nibbs’ son Oran has mitochondrial disease - a rare, genetic condition which primarily affects children, and for which there is no cure or no treatment.
Oran cannot sit unsupported, nor can he crawl, walk, feed himself or communicate his needs.
He attends the Children’s University Hospital Temple Street and the Lara Lynn children’s hospice in Dublin regulary for medical appointments.
However, the eight-hour return journey from Donegal to Dublin is taking its toll on the family, as his parents often have to give him emergency treatment on the side of the road.
"Trying to travel up and down on a very regular basis is quite an ordeal for us. Just even in practical terms, if Oran has an appointment at 9am in Temple Street for a neurology appointment, I have to wake Oran on a cold winter’s morning, like it is this morning, at 4am to try and be away from Letterkenny before 5am.”
“We’ve often done that in very difficult circumstances, if he’s having a bad day and he has quite a lot of seizures on a normal day even, we have often had to stood at the side of the road trying to administer oxygen and an emergency seizure drug in really what’s essentially a ditch.”
“You wouldn’t do that to a dog. You really wouldn’t. But our children are expected to endure that every single week of every year.”
Ashling said her son’s “high needs” would be much better served if Oran could use services in the Royal Belfast Hospital for Sick Children, rather than spending his short life travelling up and down to Dublin.
“My son is five years old and he deserves to die with dignity and he deserves to spend the time he has here happy and contented.”
“When you’re caring for a child who has such high needs you’re very conscious of the fact that you want to spend the real quality time with him, doing the nice things, the fun things.”
“You don’t want to have to take eight or nine hours out of one day with him just stuck in a car, a car which is - obviously with his condition he has literally no muscle condition - quite uncomfortable with him.”
Ashling will meet with Minister Leo Varadkar today to present him with a number of proposals which could provide a solution for many Donegal families.
“We live in Donegal which is a rural country and we feel very isolated here,” she said. “I don’t want to have to spend my time running up and down the road to Dublin because the services aren’t here (in Donegal).”
“One of our proposals for the Minister for Health is that children with life-limiting or terminal conditions within the Donegal region would be allowed to access some cross border services we’ll say for example, in the children’s hospital in Belfast.”
“We currently visit Lara Lynn hospice in Dublin and that is a wonderful facility, I couldn’t praise them highly enough, but unfortunately we can’t use it anywhere near what we would wish.”
“If we were allowed to use those services in Belfast that would over halve our journey with Oran.”
She said Oran deserves to be with “staff that are experiencing with children that are in an awful lot of pain and require a lot of attention.”
“It would mean so much to us. It is quite achievable... All the things we’re proposing today are well within [Minister Varadkar’s] grasp.”