Etta

First presentation

From the moment Etta was born, she was a ray of sunshine: a smiley, sociable little girl, full of energy, happiness and curiosity. For the first few months, we loved parenthood with our baby girl, blissfully unaware of how our lives would soon change. Etta had her first seizure at 16 weeks following a vaccination. In our first of many ambulance rides, she was taken to hospital and put through many tests. We waited, worried, and hoped it was a one-off, but as more seizures came we began researching and started our journey navigating life with epilepsy. We had no specific diagnosis and read about Dravet, clinging to the hope that Etta’s condition would not be so complex.

Challenges

Etta began walking and talking and showed no signs of developmental delay; she was like any other regular toddler, except for the seizures, which became more frequent. Many weekends were spent in hospital, as every common cold would land us there. In between hospital visits, she would bounce back and loved being outdoors, exploring in the garden, going to the zoo and playing on the beach. Meanwhile, we could barely function, trying to work whilst coping with the anxiety and exhaustion from sleepless nights, staying up to watch her when she was unwell.

The day things changed

Then, at 15 months, when we didn’t think things could get worse, Etta caught RSV. After days in hospital with a high temperature and numerous seizures, she had a catastrophic tonic-clonic seizure. She went into respiratory arrest and had to be intubated and placed on life support. We waited anxiously, not knowing if we would ever get to take our girl home. The MRI scan showed that Etta had suffered a traumatic brain injury and that global brain damage was likely. When she came off life support, she had lost everything: she couldn’t move, speak or eat; she couldn’t even hold her own head up. We didn’t know how much of our beautiful Etta was left inside her lifeless body. There was no sunshine, only darkness, and we were heartbroken.

Diagnosis and early recovery

As we were trying to comprehend all this, we received another devastating blow: a Dravet diagnosis. This brought the knowledge that life would never be simple, but it also meant that Etta could access some Dravet-specific medications. After weeks of desperate waiting, and being told each day that the prognosis for recovery was getting smaller, the little hope we had left was slipping away. Then, at the end of one very distressing day, Etta was able to focus for the first time; her eyes followed us as we walked across the hospital room. We will never forget the day we got a glimpse of our little girl again—she was still in there. The next day she smiled, and the day after she started to babble again. She couldn’t eat and could only move her head from side to side, but over the following months, with the help of many wonderful health professionals, we patiently started to rebuild her life and ours, step by step.

Returning home and to school

When we got home months later, we got in touch with Dravet Syndrome UK. They sent us a pulse oximeter, which was life-changing, allowing us to sleep knowing we would be alerted to a seizure. After two years of all kinds of therapy, Etta managed to get back on her feet and walk again. A repeat MRI a year and a half later showed remarkable brain recovery. Cognitive and psychological tests concluded she was within the normal range, and in 2025 Etta started mainstream school and is doing great. Etta’s EHCP states she needs continual supervision, and her teachers have done everything they can to make school a place of safety and inclusion for her. There was a long time when we didn’t dare dream she would make it this far.

Daily life

We have periods of seizure control mixed with more difficult times. Sunny days can turn dark and cloudy in an instant, stealing moments of joy. But we have found a way to live, expecting a seizure at any moment, and all our friends and family understand we sometimes change plans at the last minute. Our unusual version of normal involves a daily schedule organised around medication, cameras in every room, ways to keep Etta’s temperature steady, and a hospital bag packed and ready to go. We plan trips knowing there is a hospital nearby, and we carry emergency meds and an oxygen tank everywhere we go.

Support from Dravet Syndrome UK

With the support of Dravet Syndrome UK, we know we are not alone. Etta loves the annual Center Parcs weekends, and we have gained so much from the Dravet community at those events and others, giving us knowledge to make better decisions for her and helping us hold onto hope for a brighter future. We focus on now, celebrate the good times and try to stay optimistic. With the lifeline Dravet Syndrome UK provides, Etta’s sunlight shines stronger than ever.