Durga had her first seizure at 4 months old. Mum Radhika shares their story.
Over the next 4 years she had many seizures. They were triggered by things like a minor change in her body temperature or room temperature. She was frequently hospitalised with pneumonia and viral fevers.
At the age of 5, Durga had a seizure without any fever and so was sent for surgical evaluation. She was found to have focal cortical dysplasia and as a result, at such a young age, Durga bravely underwent left temporal lobe brain surgery. The surgery was very close to the areas of the brain which control speech, language and memory. After surgery, we were devastated - she had forgotten everything, including mum and dad.
Over the next 6 months, she started to learn again, like a baby, regaining some of her memory.
To make matters worse, on the 10th day after her surgery, she was given Lamotrigine, which we now know to be a medication that can increase or prolong seizures in some individuals with Dravet Syndrome. For Durga, Lamotrigine caused her seizures to become more violent and uncontrolled.
Gaining a diagnosis
We came to London when Durga was aged 8, for a visit. While here, she was able to have a genetic test. With the result confirming the SCN1A mutation, her doctors withdrew the Lamotrigine. Her seizures began to become more controlled. She was able to go to school and she started to show progress in learning.
It wasn’t until we had migrated to the UK and attended a hospital visit to Birmingham Children’s Hospital when Durga was aged 13, that doctors referred to her condition as Dravet Syndrome.
Support from Dravet Syndrome UK
I immediately started searching the internet to find answers. My search led me to join Dravet Syndrome UK, which has enabled me to have access to a lot more knowledge and talk to other families affected, sharing thoughts, treatment plans and research.
Moving to the UK and the support from DSUK has made me feel happier. Now, I do not feel alone and I’m happy to see the respect and love Durga is getting. It’s made it easier to accept reality and I’m proud of myself and my family – my husband Ramesh and Durga’s younger brother, Ganesh – for raising her
A strong and loved little girl
The first 9 years of Durga’s life were extremely difficult. But each time we’ve been in an extreme situation, Durga has fought back and come out as a winner.
She loves watching TV, drawing, going to school and playing with her little brother. Durga loves celebrating her birthday and will ask me when her next birthday is, on the very next day after her birthday, each year! She looks forward to it for an entire year – as do we!