Late afternoon of February 14, around the time that perhaps you were setting down to tea, a small hole appeared in a small blood vessel in the middle of a little four-year-old girl’s head. Little more than a drip-drip. But it kept dripping and slowly the pressure built up inside her little head.

Half-an-hour later she stopped breathing. Ambulance sirens blared through Oxford streets. Anxious relatives arrived to hug mummy. Puzzled doctors fiddle with lungs for an hour, meanwhile cells are suffocating inside that little brain. Finally someone thinks to do one of those miracle CT scans on her head which gives an array of pictures like a sliced onion only without a knife. There they are, white blobs which don’t belong. A little ball of blood, only a few tablespoons, but still too much. Impossible! Brain haemorrhages are for grown ups, not four-year-olds. But still there they are, white blobs. Scans don’t lie.

Doctors rush to remove a big chunk of her skull to relieve the pressure inside. But the damage of those drips had been done. Now she lay motionless except for the rhythmic rise and fall of her chest forced by a complicated looking machine beside her hospital bed.

Oxford Mail:

  • Rhianna Gallagher

That little girl used to love ballet dancing (how graceful she was!), she never danced again. She used to love singing. She never sang again. She used to love climbing things, she never even climbed a door step again. She used to love mummy’s cooking, she never ate another meal again. She never heard the song of a bird again; she never saw the blue sky or a pretty flower again. She couldn’t feel the touch of her brother’s hand in hers, she never felt anything again. She never saw, heard, felt, tasted or smelt anything again. She couldn’t do anything. Except blink. And yawn, sometimes.

Shortly after Easter a man started digging up some grass in a field south of Oxford. Now, a new rectangle of pretty flowers have appeared there, tended daily by a sad hand and watered by tears.

That little girl was my daughter, Rhianna Gallagher. She died on Easter Monday and was buried in Kennington cemetery five days later. Rhianna was in the John Radcliffe Hospital for a week before everyone agreed she was too badly brain damaged to survive. When the life support system was switched off doctors expected her to die in an hour or so; we all said our goodbyes, our eternal goodbyes. But no one had asked Rhianna, she decided she was not ready to go and soon started breathing properly again by herself. The next day she was transferred to Helen House – the East Oxford hospice, where she spent the last weeks of her life.

We know she is in Heaven now, maybe dancing ballet with her grandfather. But on Earth my wife and I wrestle each day, each hour with the new uninvited hole formed in our lives. Once we had cheeky laughs, good night kisses, splashing in the bathroom, a kitchen helper passing mummy the potatoes. Now we have only a shelf. With a favourite doll, a Mickey Mouse cup, some well-thumbed story books, a school bag. And the rectangle of new flowers in a field.

Rhianna was the youngest of my mother’s grandchildren. When you are young you think death happens to old people.

They have been really shaken by the loss of their youngest, adored cousin. Now six of them, aged 17 to 25, searching for some way to answer this tragedy, have started a fundraising campaign for Helen House. They are now training thrice-weekly for the Cardiff Half Marathon in October, giving up time on Facebook or down the pub with their friends to support other terminally ill children in their last days and weeks. I have not the energy to do much, still struggling with my loss. I admire Rhianna’s cousins for what they are doing.

The two months while Rhianna lay barely conscious have been the hardest of my life and even harder for my wife. But without Helen House it would have been an even worse nightmare. After her operation, Rhianna was in a very fragile state and we would have either had to leave her at an NHS unit hours away, or try to care for her at home ourselves constantly in fear we would do something wrong and make her worse. Helen House walked with us along this hard journey. Rhianna got 24-hour expert care, and we could stay just next door. Helen House was our home for two months, and they did everything they could to make it feel like a home. In a hospital everyone is so busy monitoring screens and pressing buttons, they don’t have time to help parents too. Helen House was different. We were so lucky to have this hospice in Oxford. Most cities in the UK are not so fortunate.

When we thought Rhianna looked uncomfortable, we could get not one but two trained carers or nurses to attend her quickly, to lift and turn her, or redress her wound.

When we had more complex medical concerns we could talk to Helen House’s own doctors, all experts in palliative care. They cooked all our meals, nice healthy food. We could hardly want for more. Except of course to have our daughter back; no one knew how to bring her back.

If you would like to support the Rhianna campaign please visit galla.me.uk/rhianna