Marnie's Story

Nick Allen, his wife Petra and five-year-old twin daughters Marnie and Georgia discovered Naomi House when Marnie fell ill with a brain tumour. Here Nick tells their story.

To welcome a family at such a time and to help to ease their intolerable burden requires a very special place and very special people. They need to be compassionate, empathetic, flexible, understanding. They need to predict the family needs: when to be available for support and security and when to sit quietly in the background providing solitude and privacy as appropriate. They need to be skilled and completely trustworthy.

This was the world we entered just before our daughter Marnie died of a brain tumour on July 24th, 2005 at the age of five. We had been battling her disease for just four short months. We had no expectation that our daughter would be beaten until that fateful moment when the hospital staff told us there was no more to be done. We had exhausted the usual channels of expertise and opinions, we had questioned procedures and treatment, and with our daughter in a deteriorating coma, we entered Naomi House within 24 hours of that devastating news.

This in itself was no small feat: accommodation was organised for our whole family– myself, my wife, Marnie's twin sister Georgia, and my sister and her daughter who had been close to us throughout Marnie's illness. Now they continued to provide some level of family security for an increasingly scared, frightened and confused Georgia. And of course Naomi House provided a place for Marnie and a means of organising the medication she would need in the time that remained for her.

It was at that point we discovered the joy of Naomi House and the life that exudes from it. The sound of children's laughter echoed in the corridors and gardens and was a joy to hear. A little face outside the window smiled and waved, oblivious to the pain in the room: it gave us a reality check that even in our sadness, life was continuing happily for many of the other children. But also we knew that some of the severely disabled children would one day soon be on the other side of the window. Re-reading this now it sounds macabre, but I still recall with fondness the sounds of children at play in the gardens, whilst I held Marnie's warm, still hand, singing quiet lullabies to her unhearing ear.

I also recall how, one afternoon, Georgia came running into Marnie's room from the gardens to present her sister with a little posy. She found us singing quiet songs to Marnie with help from the resident music teacher at Naomi House, Margaret. That afternoon ended with us all singing a rousing recital of all twenty verses of 'There's a Hole in my Bucket' accompanied by Margaret on acoustic guitar. The moment proved to be so special, we recreated it at Marnie's final celebration.

All meals at Naomi House were prepared freshly on the premises by excellent friendly cooks and any particular request would be catered for to the best of their resources. The dinner bell would ring, often by a child in care or sibling, and we would follow our senses toward the aroma and noise. Mealtimes were a communal affair with staff, children, parents and siblings all sat together at large tables in the dining area.

Because the house was geared to provide respite care, Marnie's twin sister Georgia was well catered for with selections from the music room, wet room fun, sensory room surprises, a swimming pool… lots of games and organised chaos for the amusement of the children. As parents in crisis, we could concentrate our strength on sharing our last moments with Marnie without worrying whether Georgia was supervised or even enjoying her stay. As best she could, Georgia understood the seriousness of Marnie’s condition and we explained the purpose of our visit to Naomi House, but she still recalls her time there as a sort of organised holiday with events and fun arranged for each minute of each day.

Our nursing carers were superb and there was no need for any indication from us that we wanted privacy with Marnie or alternatively needed some support – they would be at the right place at the right time, unfailingly.

After Marnie died… >>