My daughter Iona was born 32 years ago. She arrived at home, in such a rush to enter the world that my wife was unable to reach the nearby hospital. 

I remember holding her tiny hand in mine later that October night, looking at her sweet little face and thinking life could not be more perfect.

We had good jobs, a lovely home and now a little girl to join our beautiful boy. But as John Lennon famously sang in the song of that same name, life is what happens while you are busy making other plans.

Four days before Christmas, a doctor confirmed that Iona had complex health problems. I held our tiny two-month-old baby after leaving the surgery, the tears on my face masked by falling rain, wondering how people could still be partying and buying presents when our lives and dreams lay devastated.

Every second of that day remains etched in my memory: the visit of my parents, the seizure Iona had as her arms flailed and fists clenched in front of an ophthalmologist; his gentle words suggesting that we should immediately see a nearby paediatrician; then the terrible moment when we were told our new daughter appeared profoundly brain damaged.

This was the start of a journey lasting three decades that was often dark, frightening, lonely and unpredictable.

It fractured friendships, ruptured close relationships, wrecked plans. It changed our lives, although not just negatively. It gave us glimpses into the underbelly of a health system foolishly proclaimed as an envy of the world but filled with heroes. And it showed the crucial role of social care, shamefully treated as Britain’s second-class public service.

Iona turned out to have profound learning disabilities. She could not see, walk or talk. But complex epilepsy, a cruel condition, was her worst problem. It does not matter how often you see a seizure, it is always horrible to witness your daughter – or for our son, his sister – suffering such distress.

Funny, kind and generous: Iona Birrell, with parents Ian and Linnet, showed the magic that lies within us all

Some days she might have several disrupting her life – and always at the back of our minds, we knew any one of them could be fatal.

Seventeen years after her birth she received the diagnosis of a newly discovered and rare genetic condition called CDKL5 deficiency disorder, although this discovery changed little.

But now our daughter is dead, changing everything. Her condition steadily deteriorated over several months, then her life slipped away surrounded by her family late last year.

Although we knew this awful moment would come one day, nothing prepares you for the loss of a child. Her death is so hard to comprehend, even after living under its dark shadow for so many years and seeing it come so close on previous occasions.

Suddenly our daughter has disappeared. The pain is almost physical, the sadness so heavy, the numbing sense of loss almost palpable. 

There is an emptiness in our home as well as our hearts with reminders of her everywhere, from the many adaptations made to our house with its lift and hoists through to her familiar coats and scarves still hanging on a peg, her pink toothbrush by the sink and all the photographs on our phones. Iona grew into a funny, kind, generous and trusting woman.

So many people have spoken to us since her death about her joy. I have precious memories of hearing her chortle with delight when throwing her in the air as an infant – and of affectionate cuddles when older, even after inflicting my guitar playing on her.

She loved dancing and music. And as one carer wrote to us, she proved how wonderful life can be if you are brave, even when it is often tough.

And sometimes it was unbearably hard, both for her and for us.

The impact of discovering our second child had complex special needs all those years ago felt like a terrible crash. Your life is derailed, your dreams dissolve, your soul slumps into depression beneath a fixed smile and fragile facade. 

Iona had complex health problems and profound learning difficulties - she could not see, walk or talk

Iona had complex health problems and profound learning difficulties – she could not see, walk or talk

I remember driving into work one day and a grinning little girl in the car in front gave me a cheery wave that left me weeping at the steering wheel. Then I wiped my eyes and pretended all was fine after arriving in the office.

As Iona grew bigger, her disabilities became more obvious as other children her age began walking and talking. Our feelings of isolation, of inhabiting a different world, became sharper. 

The pitying smiles, the stares, the fumbling sense of embarrassment from other folks, could cut deep when we took our little girl out for lunch or a stroll in the park. Luckily, she could not see the looks she was getting at times as she bounced happily in her buggy. But we could. And they hurt.

The only people who fully understood were other families with disabled children. We were sent spiralling into a weird new world of scans and tests, with strange machines affixed to her head and the same old questions asked repeatedly by medics. 

Later came soul-destroying struggles with a baffling maze of bureaucracy, fighting through fatigue for schooling, support or simply a few hours of respite. It felt like we had joined a secret club that we had no wish to join.

On one week’s break in Cornwall, Iona cried loudly for hours on end through day and night, so we returned home feeling even more broken and tired. But there are also many happy memories from other holidays in places such as France, Ireland and Portugal.

In Mauritius, we rented a scruffy beach house for three idyllic weeks, Iona spending hours bobbing contentedly in the idyllic flat blue sea before wolfing down locally made curries.

Later she joined us on a summer road trip in New England, enjoying the stunning mountains of Vermont and slurping down clam chowder in Maine. Now we have joined another club that no one wants to join as bereaved parents.

As another member told me, nothing can ever replace a lost child. The pain might dull, but never disappear, leaving us marooned in mists of perpetual grief for a missing member of our family. It washes over us in waves, triggered by simple everyday events. 

Even when the sun breaks through, there is only a fragile veneer of coping over the buried sorrow – and twinges of guilt since it feels almost wrong to laugh, relax or socialise following her death.

When I look back at Iona’s three decades of life, however, I feel not just the intensity of paternal love and the profound sorrow of eternal loss but immense pride in all that she achieved against the odds.

Not simply that she survived for 31 years – twice as long as predicted by doctors in those early days. I have no doubt this was largely down to the dedication and devotion of her mother Linnet, the girl from a Scottish Highlands fishing village whom I met at university and turned out to have such amazing strength in the face of adversity after abandoning her career in advertising to care for our child.

Iona's condition steadily deteriorated over several months, then her life slipped away surrounded by her family late last year

Iona’s condition steadily deteriorated over several months, then her life slipped away surrounded by her family late last year

I was not always the most use – such as the time I flew out to France to help bring both kids home from a brief holiday with her sister. Unfortunately, I fell so ill with food poisoning from mushroom pasta that I had to be rushed off the aircraft in an ambulance, leaving Linnet to deal with Iona having a seizure and my son asking if his dad was about to die.

Iona needed 24-hour care yet she taught us so much over the course of her life. She never spoke a word. Yet she showed how to communicate differently – through feelings and movement, through holding hands and hugs, through smiles and even sometimes though silence. When I went away, she would look cross upon my return for a moment, then a sly smile would break across her face.

She never saw the world around her. Yet she taught us to envision things, even to listen, so differently. To live in the moment, to enjoy the wind in our faces, the birdsong in the skies, the melodies of the music, the taste of the cake, the warmth of the sun, the waves in the sea.

She never walked, relying on a wheelchair. Yet she taught us to tread so differently on this planet. To ignore boring social conventions – if she wanted to dance, smile, make some noise or wave her hands, she would just do it. And she never cared a jot about status, accepting people for their kindness or warmth rather than their job or car.

Perhaps some people felt pity. But she had a happy life, despite her problems. And as one neighbour said to me, she left a big hole in our north London community – not just with her personality but in the way she challenged everyone with her very presence to perceive the world in a different way. 

To see the person, not the disability, in a society that talks all the time of diversity and inclusivity yet still so often marginalises members of its biggest minority.

Iona gave me disturbing insights into the failings of the state while also demonstrating its crucial importance in supporting citizens in crisis. As the former Tory minister Edwina Currie once said, everyone is a libertarian until they have children – and that is especially true if they have severe special needs.

Parents find a system supposed to offer support that all too often only fuels their exhaustion and sense of isolation as they confront arrogant experts, officials insisting they know best and departments bickering over budgets. 

Key decisions revolve around funding – yet it is simplistic to focus solely on cash when they are hampered often by blinkered attitudes, desire to retain control and soft bigotry of low expectations.

We were fortunate: we found sufficient support eventually for Iona to live in her own home, although it was often a struggle until the very end.

There is no doubt that without her, our own lives might have been easier and much less of an emotional roller-coaster – yet they would also have been so much poorer. For she introduced us to the richness of worlds and wonderful people that we might never have encountered without her. 

And while we have glimpsed the state and NHS at its worst, we have also seen it at its best, such as with the palliative teams who helped us over the years through some of the most difficult times and intense discussions imaginable. 

Whatever happens with the assisted dying Bill, Westminster must boost this incredible branch of medicine pioneered in Britain – along with the disgracefully underfunded hospice movement – to deliver the best possible end-of-life care and support for families.

Then there are all the carers – a profession so far removed from those crass jibes about just wiping bottoms. Dozens have come into our home and into our lives from all over Britain and from many other nations – especially eastern Europe, before Brexit made recruitment so much harder. 

Just this week, one sent from Lithuania a beautiful note of thanks for being permitted to join Iona on her life’s journey.

Another carer spoke movingly at Iona’s funeral about how our daughter had become such a good friend as they explored London together, encouraging this woman from South Africa to go to events and visit parts of the capital that she might not otherwise have found. Over the years Iona enjoyed clubs and concerts, theatre and yoga, even going off to music festivals and abseiling in the West Country.

For, as this woman told the mourners, Iona was fearless and pushed boundaries: no one, nothing, really fazed her. ‘The moments I felt unsure and a wobble in confidence, my girl friend would smile, bounce and not show any sign of standing back for anyone – in this process, egging me on to do more,’ she said.

At the funeral, we showed a short video clip of Iona smiling and dancing in delight with her trademark waving arms to Nina Simone’s ‘I Wish I Knew How It Would Feel To Be Free’. 

Then we played that joyous civil rights anthem in full with its powerful message of freedom, identity and respect as the other mourners filed out of the chapel before saying our final goodbyes.

Iona showed that life was for living, despite her disabilities and health struggles. She fuelled my compassion, smoothed my sharper edges and gave me courage – to abandon the certainties of office life for life on the road as a freelance reporter, to head into conflict zones, to fight for social justice in journalism, even to pick up and start playing guitar.

Her inspiration led to several parliamentary inquiries and proposed reform of mental health law. This underlines how every person on the planet has the power of achievement and that no one should be ignored – especially not people with different perspectives who see the world so distinctly. 

Our society should embrace citizens with learning disabilities and harness their potential, not fear, exclude and marginalise them.

Ultimately, Iona showed us the magic that lies within every human being and the extraordinary possibilities of life, even in her all-too-short timespan.

My memories are filled with warmth – and when I look back at her pictures on my phone, I see only smiles, determination and such a beautifully uncomplicated form of love.

Now in our grief – three decades after the shock of seeing those first seizures – fresh waves of anguish, fear and weariness wash over us, drowning the days and disrupting sleep at night. Pain, of course, comes in many forms. But so does pleasure – as we have been reminded thanks to a brave young woman who changed our lives so intensely.

I held Iona’s hand once again as she lay on her deathbed, her life ebbing away, then her body losing its warmth. As I gazed at her goofy grin, still fixed to her gorgeous face, I had learned from my daughter over these past three decades that perfection comes in many different guises.

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