Daniel’s story is written by his mum, Ewelina.
Our Miraculous Boy and His Incredible Strength.
Our beloved son Daniel was born on May 8, 2022, at 37 weeks. His birth was induced because of gestational diabetes and a sudden slowing in his growth between weeks 32 and 36. When he finally arrived, everything seemed fine. We stayed in the hospital for a few extra days, but we went home believing our little boy was healthy and safe.
From the very beginning, though, Daniel was very unsettled and hard to comfort. He cried constantly and was almost impossible to soothe. I asked the health visitor and doctors over and over again whether this was normal, but I was always told that some babies are simply “high-needs”. Still, in my heart, I felt something wasn’t right. We tried everything — new formulas, diet changes, different doctors — but nothing brought him relief.
During a visit to my home country, Daniel underwent several tests. All of them came back normal, yet the worry never went away. When we returned to England, I kept asking for help until, when Daniel was almost one year old and still unable to sit up on his own, we were referred to a paediatrician. From there, everything began: physiotherapy, an MRI, and genetic testing.
The first test came back showing reduced GALC enzyme levels, a possible sign of a metabolic storage disorder. Our world stopped for a moment. The test had to be repeated, and we were left waiting, terrified, trying to hold onto hope. Thankfully, the MRI showed no abnormalities.
While waiting for further results, I noticed Daniel’s eyes moving in a strange, unsettling way during a walk. Something inside me told me to record it. That very same day, the paediatrician called to ask if I had noticed any unusual movements. When she saw the video, she immediately suspected epilepsy. Daniel was referred for an EEG, which confirmed seizure activity. He started treatment soon after — the beginning of a journey we never imagined we would face.
Just one day after starting medication, Daniel had his first tonic-clonic seizure. We rushed to the hospital, terrified, watching our tiny boy fight. At that point, he still wasn’t diagnosed with infantile spasms because his EEG didn’t show hypsarrhythmia, even though the spasms and head drops were obvious. The follow-up genetic results were borderline, ruling out the disorder they first feared but leaving us with no clear answers. Doctors then decided to test both me and my partner.
Daniel’s first seizure happened in December 2023. Since then, he tried three different medications, but none brought relief. In March 2024, another severe seizure led to a two-week hospital stay — the hardest two weeks of our lives. Doctors tried everything: medication after medication, intravenous treatments, rescue medications. Nothing worked. During that time, our little star began to regress, losing skills he had worked so hard to gain. Eating became difficult, and we had to move back to pureed foods. Watching your child lose abilities… there is no preparation for that kind of pain.
After we left the hospital, we were urgently referred for feeding therapy and a 24-hour EEG. This time, the EEG confirmed what we had feared: late-onset infantile spasms. Daniel was losing skills quickly, and doctors sped up further genetic testing. Again, the results brought no clear answers — only more fear, more questions, more waiting.
Then Daniel was prescribed Vigabatrin — and suddenly, it felt like a miracle. He began regaining lost skills. His eyes looked brighter. He was more connected. For the first time in so long, we felt real hope. But after four precious months, the medication stopped working, and the seizures returned.
Next came a month-long course of steroids, but they brought no improvement at all.
Doctors then introduced sodium valproate, which seemed to help slightly at first — long enough for Daniel to start walking, a moment that felt like pure magic. But soon after, the spasms returned again.
Because Daniel reacted so badly to steroids and other medications like Clobazam, we begged to try the ketogenic diet. After so many treatments with so little success, we needed to try something gentler. Thankfully, we were eventually referred to begin the diet. For us, it felt like the right path — something that could help without causing more harm.
Although the ketogenic diet hasn’t stopped the spasms completely, it has given us something incredibly precious: Daniel’s personality. He is more focused, more present, more connected to the world around him. We see small but beautiful steps forward, and each one feels like a treasure.
In September 2025, Daniel had another MRI, which showed some abnormalities. Doctors explained that they might be side effects of sodium valproate, or they could suggest an underlying condition we still don’t know about. More tests are underway. In the meantime, he was also diagnosed with GERD. We are now hoping and fighting for a referral to GOSH, because despite everything we’ve tried, Daniel still has seizures. We will never stop searching for answers. At the same time, we are trying to ensure that his reception year includes the right support — the support he needs and deserves.
When Daniel was younger, he disliked being touched. Even gentle cuddles upset him. Now, he sometimes walks over to us, lifts his little arms, and wraps them around us. These moments… they feel like the most precious gifts. Something we once dreamed of but feared we might never experience.
Despite everything he has faced, Daniel continues to shine with incredible strength. Every smile, every tiny step forward fills our hearts with hope. We don’t know what the future holds, but one thing is certain: we will love him endlessly. We will fight for him, protect him, and fill his life with as much happiness and love as we possibly can.
And finally, we want to express our deepest gratitude to UKIST. Your support, care, and dedication bring hope to families like ours and strength to little warriors like Daniel. Thanks to you, we never feel alone on this journey.
