Letter to my son: Even a short life can have the biggest impact
Sarah Grogan, from Altrincham, Cheshire, pens a moving letter to her beautiful baby boy, Frankie…
Dear Frankie,
Right from the start, you were a smiler. You were just two months old when you first broke out into a beam and while people joked it was probably just wind, I knew better.
You’d give your gurgly grin to anyone and soon, even strangers were commenting on it. Pride would shine from me.
You were 5lbs 14oz when you were born in January 2016, but you didn’t stay that little for long. Soon, you were sitting, crawling, tottering…
You were animal-mad, and giraffes were your absolute favourite. Whenever you saw one in your books, you’d point and clap excitedly. ‘Re-jaff!’ you’d squeak.
Despite your enthusiasm, you hadn’t quite got the pronunciation right. But your daddy, James, now 39, and I preferred your version. Soon, that was how we’d all say it.
Just before your first birthday, you had a febrile seizure at home, completely out of the blue. I worked as a primary school teacher, so I recognised what it was. But it was scary, seeing it happen to my own little boy.
‘It’s not uncommon for babies and toddlers to suffer with febrile fits,’ the doctor told us, at hospital. ‘He should grow out of them.’ I knew that in my head, of course, but my heart was still hammering.
About a month later, it happened again. We returned to hospital and you recovered quickly, back to your beaming self within hours.
After that, it was a regular occurrence. Every month or so. They usually indicated you were coming down with a bug,
Thankfully, you took them in your stride.
You grew into a mischievous toddler, who loved building bricks and Peppa Pig. And animals… every few weeks, we’d take you to the zoo and loiter around the ‘re-jaffs’, as you gazed at them, mesmerised.
Over Christmas 2018, you took a liking to Shakin’ Stevens’ Merry Christmas Everyone. You insisted on playing it well into Spring 2019, bending your knees and clapping your hands, all while smiling your beautiful smile. It was impossible not to join in.
In May, Daddy was due to run the Manchester 10k.
You, three at the time, were a bit off-colour the night before. More clingy than normal and refusing food.
With no temperature, I thought the best thing was a good night’s sleep, so I tucked you in, read you a story and kissed you good night. When I checked on you after half an hour, you were sleeping peacefully.
Then, at about 4.30am, I awoke to find you standing next to me. ‘Mummy, can I have a drink?’ you whispered.
‘Of course,’ I murmured, pulling myself out of bed.
I sat next to you, stroking your head as you drank it.
As I bent down to kiss your cheek a final time, there was nothing worrying.
At 7am, the alarm woke Daddy and I. We looked at one another in surprise. ‘He must still be asleep,’ he said. Unusual, you were up with the crows.
So, Daddy went into your room while I switched on the shower. But before I could step
in, I heard a shout.
I will always remember the horror of running into your room and seeing your body still, your blue lips. But I couldn’t let the shock set in, I had to help you. I began CPR, frantically trying to remember everything I’d been taught, while Daddy called an ambulance.
It felt like an age that we were there, on our own, trying to save you, and I promise, my darling, we did everything we could. I was so relieved when the paramedics arrived...
I was so certain they’d save you. Looking back now, I guess I couldn’t imagine any other outcome.
But it wasn’t to be. After an agonising 45 minutes at the hospital, a doctor took us into a room. ‘I’m sorry,’ he said.
His words hung in the air. I couldn’t comprehend that they were for us, that they were talking about you.
You were just three years old. As you’d passed away so suddenly, we had to remain at the hospital. The police were at our home. I desperately wanted to hold you just one last time, praying you’d wake up in my arms. But I wasn’t allowed. I understood the reasons why, but it didn’t make it any easier.
Eventually, your body was transferred to Alder Hey Children’s Hospital, Liverpool, where we received incredible support and care from the bereavement centre.
In June, it was time for your funeral. It seemed surreal, to be laying you to rest in the place you’d just been christened.
‘If there’s one thing I’ve learned’ ‘One short life can have a huge impact in the us world. Frankie guides every day and we know his legacy is to save children in the future.’
I stood there, stock-still, staring blankly at your tiny coffin. But then Merry Christmas Everyone started playing. A flood of happy memories crashed over me, and I could see you, shaking along to your favourite song.
And it wasn’t just me. Everyone began smiling, and laughing. Before long, they were clapping, even dancing to the music. What could have been our saddest day became a joyous celebration of your life and although you weren’t there with us, your lively spirit was.
Without your boundless energy, the days stretched out endlessly in front of me, so I set up ‘Friends of Frankie’, to raise funds for Alder Hey and also for Sudden Unexplained Death in Childhood (SUDC UK).
Our logo is a ‘re-jaff’, which we know would make you smile. Daddy and I are hoping to run the Manchester 10k this year, if Covid restrictions allow, along with 200 friends and family. We also held a fundraiser ball, on what would have been your fourth birthday.
An inquest in September found you passed away from an extraordinarily rare brain condition – a hippocampal malformation – which is associated with sudden death.
We’re campaigning to raise awareness amongst the medical profession of the importance of research, using tissue from affected children to try to find a cause. We don’t want any other family to lose their precious sons or daughters.
We’ve given our permission, too, for Frankie’s brain tissue to be used in research.
Now I’m 37, and I hope that your legacy will live on and save the lives of other children, just as your smile lives on in our hearts.
Love for ever, Mummy x