A new documentary from an award-winning Donegal director offers a a rare insight into the realities of life caring for a dying child.
‘No Time To Die’, which airs on RTÉ One at 2.35pm this Monday (March 25) is directed by Garry Keane, a native of Ballyshannon now living in Barnesmore.
The programme looks at pediatric palliative care through the eyes of four families. In this special, one-off documentary, we glimpse the dignity and courage of families as they make the most of short and precious lives, where milestones are measured in days rather than in years.
Over six-months we get to know the families of LauraLynn House, Ireland’s only pediatric hospice.
We witness powerful, intimate portrayals of families who have made LauraLynn a home away from home.
Beyond LauraLynn, we meet other families who are trying to care for their child at home with the support of community nurses and organisations like the Jack and Jill Foundation.
We see the daily struggles, as parents become round the clock caregivers, administering medications while trying to maintain a quality of life for their child.
Two of the young children featured in the programme have inoperable cardiac conditions, while another has Lissencephaly, a condition that causes abnormal development in the brain.
The fourth featured family are Brian and Sharon Thompson from Donegal, who lost their little baby girl Victoria at the age of just nine months to a rare degenerative genetic condition.
The documentary offers a profound exploration of a very difficult and emotive subject. Children are not supposed to die. That is not the natural order of things.
Parents should not outlive their children. However, there are approximately 1,400 children living with a life limiting condition in Ireland at any one time and around 350 childhood deaths occur every year from these conditions.
This film is a moving and evocative portrait of lives lived out against the backdrop of palliative care home visits, of bustling hospital corridors and wards, of night shifts, of consultations, of quiet family moments and the inexorable sound of the ticking clock. Ultimately, ‘No Time To Die’ is a reflection on life, love and loss.