Eva was born with CDG, a condition you are unlikely to have heard of.
Congenital Disorders of Glycosylation is the collective term for a large group of rare and complex genetic, metabolic diseases which affect all parts of the body, including the brain.
Diagnosis is a devastating moment for any parent – it all but guarantees that your child will face continual, grievous challenges, require round-the-clock care, and have a shortened lifespan. Symptoms in infancy include low muscle tone, poor growth, developmental delays, seizures and stroke-like episodes and heart problems. There is much to come to terms with.
My dear cousin Jill and her husband Paul went through this anguished process following the birth of Eva. They were forced to rethink their hopes and expectations for her, and to reconstruct their lives around her care. Tough days and great sacrifice lay ahead.
They did all this willingly, and with deep love and dedication. Despite her profound disabilities, Eva had a full and fulfilling existence. She rode horses and made trips to the beach in a specially built wheelchair. She attended and enjoyed school. She and her younger sisters, twins Sofia and Iona, were as close as siblings can be.
Eva passed away on August 8, at the age of 12. Last week, I travelled to Cambridgeshire, where Jill and her family live, for the funeral.
Ahead of time, I was dreading it – the loss of a child, even the thought of it, is unthinkably painful. As I hugged Jill – what to say? – I stupidly asked how she was doing. “Oh, you know…” she replied, before adding gently, “Well, you don’t, and I hope you never do.” I felt my heart break.
A funeral entirely at one with nature
Eva’s funeral was an occasion I will never forget, though not only for the reasons you can imagine.
It took place deep in the Cambridgeshire countryside, at the Barton Woodland Burial Ground, which covers almost 40 acres. More than 20,000 trees have been planted there, including oak, ash, lime, wild cherry and silver birch. Birds chirp and butterflies flit among the flowers as the breeze blows softly through the branches. There are no gravestones or monuments – only biodegradable wooden plaques on the ground. It feels like a subtle, serene, sylvan heaven.
Appropriately, the entire funeral was at one with nature. Eva arrived in a small, electric hearse, and lay in a woven casket. The service was held in a wooden, chalet-style building, led by a humanist celebrant, and interspersed with readings from those who had known and loved Eva best.
There were lots of tears, but also many smiles amid the reflections – how she had her mother’s sparkling blue eyes and her father’s wide, warming smile, how visitors to the house would be expected to pay court to “Queen Eva” until they were dismissed, how her belly laugh would fill the room – and, oh, how she loved to laugh.
Eva had lessons to teach us all
Like all children, she could be naughty: she was never happier than when playing with her sisters, though if they got too big for their boots, she would tug their hair to remind them who was boss.
She bore the traumas of her condition, the seizures and hospital visits, with fortitude, and lived in and for the moment. Eva had lessons to teach us all – we who constantly fret over trivial, passing matters, so often missing the larger point of things.
Her six-year-old sisters sat beside her, in shining yellow sundresses, on this final journey
Throughout the afternoon, Jill and Paul showed a dignity and bravery that I found almost unfathomable – and when Jill addressed us all, it was with a mother’s raw heartbreak coupled with immense pride in and love for her daughter.
Then Eva was placed on an open, flower-strewn carriage and pulled to her place of rest by a great, white horse. Her six-year-old sisters sat beside her, in shining yellow sundresses, on this final journey, as the rest of us walked behind, the only sounds our footsteps, the trundle of the wheels and the occasional equine neigh.
An astonishing outpouring of love
Within an hour of the funeral’s end, I was on a train back to Scotland, gazing through the window and struggling to absorb the immensity of the experience.
I thought of my excitement whenever I used to make childhood visits to see Jill and her brother Nicky. They were my glamorous, slightly older cousins: Jill sharp and beautiful and funny, Nicky cool and dry, with an enviable array of Marvel comics and an impressive record collection. I always wanted to be more like them. Geographical distance means we don’t see each other as often as I’d like these days, but I still look up to them.
I thought of how the young girl that was Jill would eventually have to find the strength to cope with the heavy demands caused by Eva’s condition, what she’d have to set aside of her own aspirations and ambitions. I tried to comprehend that one day, unbearably, she’d have to bury a daughter of her own.
But, most of all, I thought of the astonishing outpouring of love in that small, wooden chalet, of those lucky enough to have known Eva well, and whose lives were forever changed by her – not just friends and family, but her carers and NHS workers.
This sharing of love is what truly matters, the only worthwhile legacy we leave behind. For this, despite her poor, damaged body and too-short life, I will forever remember Eva as a superhero.
Chris Deerin is a leading journalist and commentator who heads independent, non-party think tank, Reform Scotland
