Once in Royal David’s City.
Choir and congregation
The words by Mrs C F Alexander come from a set of ‘Hymns for Little Children’ (1824).
The tune ‘Irby’ was written as a Christmas carol by Henry John Gauntlett and published in 1849. Gauntlett became organist at the age of 10 in the church where his father was the vicar, but went on to work as a lawyer for 15 years before becoming a professional musician who wrote over 1,000 hymn tunes.
The descant is by Stephen Cleobury.
Utterly inspirational: An interview with the terminally ill music prodigy risking his life for one last carol concert
On one level, the exchange is typical of the kind you’d expect between a mother and her student son. Alex Stobbs — dressed in odd socks and refusing to use the hairbrush his mum has run to fetch — is rolling his eyes, implying there is some maternal exaggeration at play.
His mother, in turn, is trying to tell the story of the day she let herself into his university room, to be confronted by ‘an almighty mess’.
Were they talking about the normal detritus of student life — mouldy clothes mountains, empty beer bottles, forgotten pizza boxes — it would be funny. But they are not. For what Suzanne Stobbs came across that day — with apologies here to the squeamish — was a bucket full of her son’s blood.
‘I knew what it meant, of course,’ she says, putting a hand up to stop his protests. ‘He’d been coughing up blood, and lots of it, too. It had happened in the night, when he was alone. What shocked even me was that he’d got up in the morning and gone off to choir rehearsal without a word to anyone.
‘That is Alexander all over. I gave him grief. I said: “For goodness sake, Alexander, what is a phone for?” It happened again, the following night. That one was a blue light affair, with him being rushed to hospital in an ambulance.’
There is no need to ask how many times Suzanne Stobbs has made her own frantic way to a hospital in the early hours to be at her youngest child’s side. She would have lost count many years ago.
Two decades have passed since a doctor sat her down and told her that her newborn baby had a congenital condition called cystic fibrosis. Some children born with CF, as it has long been abbreviated in this house, make it to adulthood; some do not.
The unpredictability of the condition — and Alex, 20, has a virulent form which is systematically destroying his lungs, bones and digestive system — makes it particularly cruel for parents. When Alex was nine, Suzanne was told to prepare for the worst. At 13, ditto.
That Alex is alive today is down to a daily drug-and-treatment regime that would surely have had his mother running from the room all those years ago.
‘It’s probably best that you learn it all gradually,’ she admits, explaining about the 50 tablets a day, the daily physio sessions, the oxygen cylinders and the high-calorie food supplements that are administered intravenously while her son sleeps.
She says things like ‘life has to go on’ when talking about how you juggle a terminal illness of one child with the demands of three healthy children, as she has done. But she admits she still refuses to travel abroad, ‘just in case’.
And yet what makes Alex’s story so astonishing is that not only has he endured his illness with fortitude, but that he has overcome its immense hurdles to emerge as one of the greatest musical prodigies of his generation.
You may have heard about Alex Stobbs. Two years ago, a documentary was made about his extraordinary life.
A Boy Called Alex followed him as a student at Eton College, examining how someone with a life-threatening illness could defy all the odds to conduct the notoriously difficult Bach Magnificat.