Sebastian

The National Centre for Young People with Epilepsy is a light in Sebastian’s life, honestly, it fulfils his life in a way I thought he couldn’t because of his epilepsy and severe disabilities. Anna talks fondly of the organisation that has played such an important part in her 15 year old son’s development and a place that has become a second home for herself and her family.

From day one I knew Sebastian wasn’t a well child, Anna recalls. His twin sister was behaving very differently. By the time he was nine months old Sebastian wouldn’t sleep and every 15 minutes would arch his back. We were referred to a paediatric unit at the local hospital who did an MRI [magnetic resonance imaging] scan and told us the news that Sebastian had a benign brain tumour.

It was a mix of relief and shock to be told Sebastian had a tumour, explains Anna. We knew that something was dramatically wrong.

Anna was also told that the arching of Sebastian’s back was due to colic. It carried on for three years until we spotted some patterns and did some research finding out they were gelastic seizures – the sound he made at the same time was an illusion of laughter – a symptom of the rare brain tumour called hypothalamic hamartoma.

Sebastian’s brain tumour was a plum-sized clump of cells buried in the brain by the hypothalamus which controls sleep, appetite, emotions and behaviour. The condition hypothalamic hamartoma can cause problems including epilepsy and learning and behavioural difficulties. Sebastian was having between 80 and 100 daily seizures each lasting up to five minutes.

Sebastian was a very unhappy child, Anna remembers. He was constantly screaming and hyperactive and had the behaviour of a child with autism. He didn’t develop well early on – his speech consisted of repeating sentences without knowing the meaning.

When Sebastian turned three years old he started to have general tonic clonic seizures where the person loses consciousness and falls to the floor. He had 25 to 30 tonic clonic seizures a day, each lasting up to ten minutes with the gelastic ‘laughing’ seizures in between each lasting a minute. Sebastian’s tumour was one in a million.

At the age of four Sebastian had surgery to try and remove the tumour. Only ten percent of the tumour was removed and it caused Sebastian to suffer a stroke leaving him paralysed on his left side and partly deaf. It left us with a physically handicapped child, Anna tearfully remembers.

At the age of nine Sebastian’s family raised £25,000 to send him to Australia to have a pioneering operation to remove the tumour and improve Sebastian’s quality of life. We had to be certain Sebastian wouldn’t come to any additional harm but surgeons didn’t know what impact the stroke would have on the operation or the recovery.

But finding an appropriate school for Sebastian was a different challenge. Before we found out about The National Centre for Young People with Epilepsy [NCYPE]’s St Piers School Sebastian attended a school for physically disabled children but it couldn’t cope with his epilepsy, Anna explains. Sebastian joined St Piers School as a day student aged eight: The curriculum was for people like Sebastian and there was a medical centre on site, says Anna.

Unfortunately two years ago Sebastian’s epilepsy worsened. The doctors told us to make Sebastian residential to give him the 24 medical hour care we weren’t able to give him at home, Anna emotionally says. His tonic clonic seizures were now in clusters and every five to six weeks Sebastian would have seizures every few seconds.

What was special about The NCYPE? It is an excellent establishment – its specially trained staff provides 24 hour cover and it caters for people with severe learning difficulties like Sebastian, explains Anna. He’s a member of a community there.

The NCYPE understand how epilepsy affects the brain and has resources and research for this. There’s also a systematic approach to Sebastian’s epilepsy – the same friendly specialists and staff look after him which is important.

Sebastian’s education is excellent and he is so well looked after – the staff at St Piers School and in the residential homes put together something special for each pupil, Anna asserts. The staff are so committed.

One of Sebastian’s achievements is becoming more vocal. He works with a variety of specialists such as Speech and Language therapists and Sebastian is now able to convey his learning from the class into the outside world. When he started at St Piers School he said ten basic words – a few months ago he saw himself in the mirror and said “mirror”. Before he would never look at himself but he’d learnt the word in class. Another time he asked for a cake because they’d made them in class. For Sebastian this achievement is equal to a Nobel Prize, Anna smiles.

Since Sebastian has become residential he’s increased his independence. He needs a structured world as he has autistic tendencies. Sebastian will never be fully independent but The NCYPE has helped to increase it which has also made him easier to be looked after.

Sebastian lives in one of The NCYPE’s all year round residential children’s homes for those whose complex needs require specialist help beyond term time. Sebastian goes home very often and Anna and her family visit Sebastian frequently, being fully involved in his life at The NCYPE.

I’m secure in the knowledge that Sebastian is gaining independence and an education, says Anna. The NCYPE is a showpiece in this country – it’s difficult to match its excellence with anything else. We’re very lucky that Sebastian has a place at St Piers School. It doesn’t matter what you do when Sebastian comes home to stay, he’s always ready to go back to school and even tries to put his shoes on, Anna smiles. Sebastian has genuine enthusiasm for the place he regards as home.

I’m happy for Sebastian but still heart broken that my little boy isn’t at home, explains Anna. Even for hardened mothers like myself you can see the benefits of The NCYPE’s multifaceted approach and the techniques it uses – you have to admit that it is good for your child to be where the best care is.