Sebastian's Roald Dahl nurse

Roald Dahl's Marvellous Childrens Charity

Baby Sebastian in back garden

“Our Roald Dahl nurse Charlotte picked me up off the floor and assured me that we can deal with it.” Sebastian’s mum Kate.

In November 2010, baby Sebastian was born to the delight of his parents and big sister, Izzy. 

When he was seven months old, Sebastian had his first seizure. The following night he had another seizure and then another one four days later.  Sebastian’s mum and dad were very worried, but each time they took Sebastian to hospital, they were sent away and made to feel that they were making a fuss.

Soon afterwards Sebastian started to bang his head from side to side in his cot, and it looked as though he was having electric shocks. His mum Kate was sent away by another doctor who assured her that Sebastian would be fine.  Kate didn’t know where else to turn. “I felt as though my world had collapsed.” 

The next day when Sebastian had another seizure, Sebastian's mum and dad were finally able to take him to see a neurologist, and also met Charlotte, a Roald Dahl Sapphire Epilepsy Nurse Specialist.

It was Charlotte who was the first person to tell Sebastian’s mum and dad that their son had epilepsy. There are lots of different types of epilepsy which cause different types of seizures. Sebastian's epilepsy is called Myoclonic Epilepsy in Infancy. 

Sebastian’s epilepsy has had a big impact on the whole family. His dad had to change jobs so he can spend more time at home with Sebastian. Sebastian's big sister Izzy was very frightened. His mum Kate was extremely worried about being left alone with Sebastian in case he had a seizure.  Activities and family time stopped.

But Roald Dahl nurse Charlotte helped to turn things around, always on hand with practical advice and support. Sebastian still has some seizures at night but he’s developing well and enjoying playing with his toys, especially his building bricks. Sebastian is growing up to be a very happy and affectionate little boy.

Charlotte’s support wasn’t just for Sebastian. She got Izzy involved too, and explained to her about her brother’s epilepsy. Charlotte gave Izzy a board game about brains for the whole family to play together. 

Charlotte has also made it possible for Sebastian to attend nursery because she trained his nursery staff on the best ways to look after him. They now know what to do when Sebastian has a seizure and can give him his emergency medication.  Since Sebastian’s form of epilepsy can bring learning difficulties, it is really helpful for him to attend nursery for extra stimulation and to mix with lots of children.

Kate has begun to feel like life is getting back to normal, and Charlotte has played a big part in helping.  “Charlotte is the first person that I truly trusted. I now know that life can be normal.”