Rupert’s story has been written by his mum, Abby I chose the title because I think the phrase that Abby used will resonate with so many of the UKIST families. Jenny
It’s strange how the moments you think will stay with you forever are often the ones your mind quietly lets go of – not out of choice, just over time. You don’t even notice they’re gone…until you sit down to write about it.
I won’t pretend it’s all been flowers and roses. It’s been thorns, storms, and a whole lot of growth too.
I can’t pinpoint exactly when Rupert’s spasms began — to me it feels like they were always there, and others can remember the point something changed and Rupert stopped tracking with his eyes. What I remember is saying ‘He’s doing something weird…like he’s uncomfortable.’ That was the only word I had. Nothing else made sense.
For two months, we were in and out of GP appointments, trying everything possible with the assumption that Rupert had colic. He wasn’t smiling ‘he’s probably too uncomfortable to smile,’ I remember saying. I kept telling myself: ‘This is motherhood,’ ‘Everyone goes through this,’ and ‘You just have to keep going.’ But deep down, I was quietly falling apart, while the world moved on around me.
A week into a trial on formula for severe allergies, I phoned the GP and said I couldn’t do it anymore. Nothing was working. Everything seemed better for a few hours…then it all got ten times worse. The GP told me, ‘Come into the surgery. Bring an overnight bag. I think the only option now is A&E.’
That decision saved us.
In A&E, Rupert was diagnosed almost immediately: Infantile spasms. We Googled it. Our hearts sank. He ticked every single box. Rupert’s initial EEG was so chaotic, they suspected Ohtahara Syndrome — a diagnosis with a life expectancy of under two years. We had worried about Rupert having a diagnosis of severe allergy and hoped it wasn’t the cause, but in the end, we would’ve given anything for it to be just that. Because what it became was something far more frightening, far more permanent.
The real battle began after the spasms were successfully treated. Rupert developed a seizure type that causes him to stop breathing. Month after month, we found ourselves back in hospital. Seizure after seizure. He was nearly one before we came up with a plan that could mean we could manage his seizures at home and not have to call ambulances every time.
Before his diagnosis at four months, Rupert hadn’t met any developmental milestones — and even afterward, they still didn’t come. We turned to private therapies, driving for hours just to give him a chance. Our lives became a calendar of appointments, treatments, and interventions. I wasn’t just his mum anymore — I was his advocate, his carer, and his full-time therapist.
Rupert still hasn’t ticked those ‘typical’ milestone boxes. But those who truly see him know he’s making incredible inchstones every single day. His strength, his spark, his resilience…shine through in his own beautiful way.
Rupert turns three this month. Those years have flown by, even though some of the days felt impossibly long. Now he’s a cheeky, food-loving, joy-filled little boy who has taught us what it really means to fight. We have discovered Rupert’s love for Butlins, which ignited our love for Butlins too, and we have had two precious family holidays there since. For us, it wasn’t just a holiday — it was a chance to simply be a family. To laugh, play, and enjoy fun time as a family, without life revolving around appointments and therapies. Just joy, freedom, and togetherness. And it was so, so special.
And here are Rupert’s latest successes! In the lead-up to a recent operation, Rupert had just two weeks to transition from drinking from a bottle to using a straw or open cup. It was a challenge, but in true Rupert style, he gave it everything. Fast forward a few weeks, not only is he bottle-free, but he’s now confidently drinking from an open cup without as much need for any thickener! His strength, perseverance, and ability to adapt continue to amaze us.
If you slow down long enough to truly notice him, Rupert will teach you a different way of seeing the world, a deeper way of connecting. He may not speak with words, but his eyes, his smile, and his laughter say everything you need to hear. He’s shown us that joy doesn’t need milestones to be meaningful. A moment of connection, a new sound, a tiny movement (or big kick) can hold as much magic as a first word or first step. Rupert may not walk the same path as others, but he’s forging his own with courage, strength, and so much heart. And that’s why he is a true warrior!
He has changed our lives in the hardest and most beautiful of ways and we will always be endlessly proud of him. But the anxiety never truly leaves. You just learn to live in a constant state of alert. Always watching, waiting, hoping. We’ve had people who have stood by us through everything and others who haven’t known how to. As Rupert grows; taller, stronger, more vocal with his joyful chattering and singing — we know that support may shift. But no matter what changes, one thing will always remain. Rupert is deeply loved, fiercely celebrated, and never, ever alone in this journey.
