Our warrior post for May is written by Jonah’s mum, Katie.
Jonah was born on 30th July 2023, weighing a healthy 10lb 3oz. He was our happy, content little boy, coming home to meet his big sister Isla who absolutely idolised him from the very start.
On Christmas Day 2023, Jonah’s first Christmas, our world changed. At just four months old, he had what I now know was a classic infantile spasm. Those first few days were filled with fear and uncertainty. We were initially told he was Flu A positive, and we clung to the hope that this was all it was.
But on 28th December, following an EEG, our worst fears were confirmed—Jonah was diagnosed with infantile spasms.
Our world completely shattered. The life we had imagined suddenly looked very different.
Jonah started treatment immediately with steroids and vigabatrin, and we are incredibly grateful for the care he received. After 17 long days, we were finally allowed home, but that’s when the real journey began.
Sleepless nights. Constant worry. Watching every movement. Questioning every eye roll, every little jerk, wondering if it was another seizure.
Jonah did really well initially, but after we weaned vigabatrin, he relapsed in May 2024. Thankfully, his seizures were brought back under control and we are so proud to say that Jonah has been seizure-free for two years on 23rd May 2026 
Jonah is your typical two-and-a-half-year-old. He loves being outside, getting into everything, and absolutely adores his big sister. He’s inquisitive, determined, and full of life. He started walking in April last year and hasn’t stopped since, now climbing on anything he can! He has a few wee words “mama,” “dada,” “baba” and every single one feels like a huge victory.
That’s not to say the journey has been easy there have been many, many lows. In those early days, I felt I had to prepare for the worst. My partner Kyle coped differently he held onto hope and believed Jonah would be okay. We balanced each other in the hardest of times.
We have been incredibly lucky with where Jonah is today, and a huge part of that is thanks to the UK Infantile Spasms Trust. The support they provide is truly invaluable. Through them, we’ve met other families walking the same path, people who understand, who are there at the end of a message on the hardest nights. That support has meant everything.
While this isn’t the life we imagined, it has brought unexpected positives. I got to spend a full year at home with Jonah, something I’ll always be grateful for. And now, every milestone feels bigger, every achievement more meaningful. We celebrate it all.
To the parents at the beginning of this journey, or those still waiting for seizure freedom, we see you. We are with you. I cry those tears with you too. It is hard, unbelievably hard.
But you will smile again. You will find joy in the smallest moments. And one day, you’ll see the magic in this different life.
Thank you to the UK Infantile Spasms Trust for everything you do
