Grace

Around three of the first five years of Grace’s life involved her being in hospital. She was diagnosed with alternating hemiplegia at 22 months old, a condition caused by damage to part of the brain which makes the affected side of the body weak and lack control, rather like a stroke. From three months old Grace started having attacks, twitching in and out of consciousness, explains her Mum Tamasine.

From six months old Grace saw Professor Brian Neville, a leading figure in paediatric neurology and neurodisability, and was diagnosed with epilepsy when she was five. In a way it was a relief, explains Tamasine. You’re in a wilderness not knowing what’s happening but at the same time you’re relieved that you’re not imagining what you think you’ve seen.

Grace had every kind of seizure imaginable, remembers Tamasine. These ranged from tonic clonics, also known as grand mal seizures, where the person loses consciousness and falls to the floor, through to absence seizures also known as petit mal, which involves a sudden lapse of conscious activity.

Initially when we received Grace’s diagnosis we realised that life wouldn’t be the same as everyone else’s, explains Tamasine. You go through blaming yourself, your partner, and different things, but you get your head around it day by day. I’d never come across anyone with epilepsy before.

Grace started at a special school for children with severe physical disability as it was the only one available which had a nurse who could administer the emergency medication that she might need if she had a particularly bad seizure. But every time Grace had a seizure we had to come and pick her up, remembers Tamasine emotionally. Grace had no peer group and would look after the children who were less able than her – she knew how feeding tubes worked by the time she was seven but she couldn’t read or write. People didn’t know why she was at the school because she wasn’t physically disabled.

By the time Grace was seven we were at the point of despair, continues Tamasine. We knew that Grace was capable of so much more. Professor Neville told us about assessments that The National Centre for Young People with Epilepsy (NCYPE) was running and we managed to get Grace one./q> At the same time Grace’s family found out about St Piers School, part of The NCYPE, which offers day and residential education places for children and young people with complex epilepsy and other neurological conditions. After an 18 month funding battle Grace became a residential pupil at St Piers School, age nine.

The impact of Grace being at St Piers School is amazing, smiles Tamasine. She’s got a peer group, friends and can go to birthday parties – you can’t measure what it’s like to have a friend. When Grace was little if she had a seizure at one of her friend’s birthday parties it would ruin the party, so they stopped inviting her. The School has given Grace confidence, a whole new outlook on life, values and most importantly a life.

The education Grace has received at St Piers School has been second to none, Tamasine beams. When she began Grace couldn’t write her name was self-conscious of her speech. Now she’s good at maths, can read, write and is a whiz on computers. Grace has been trampolining canoeing and lots of things she couldn’t access locally once you’ve disclosed her epilepsy.

Tamasine continues: Being at St Piers School has made Grace more comfortable in her own skin – she knows having a seizure isn’t the end of the world. When she was younger she loved dolls but said that all of them were sick like her. Now she’s 13 all her dolls are better and she wants to become a nursery nurse when she’s older. And I know nobody will be able to stop her!

When Grace hit puberty it coincided with her realisation that her epilepsy was not going away, although it was as under control as it could be. Grace’s behaviour and emotions went downhill, Tamasine explains. Grace temporarily left St Piers School although her tutors weren’t going to let her get away that easily. The staff were outstanding – they all gave Grace lots of support and treated her like an individual. Grace’s family, with the help of the staff, started to reintroduce Grace to school for two or three days a week as a day student. By the end of the third month Grace was back to being a full-time residential student at the School.

Everyone put so much time into making sure it worked for Grace being back as a residential student, Tamasine continues. They made sure Grace had all the skilled professionals around her and made a rota of people to come and spend time with her. Sometimes they would come in early and have breakfast with her as a treat. Grace put in a lot of hard work too – she always got on well at the School and wasn’t prepared to let it fail.

In the interim period, Tamasine and her husband Dean tutored Grace at home using work provided by Grace’s teacher so that she wouldn’t fall behind. What they did was beyond the call of duty, Tamasine emotionally says. The team still keep an eye out for Grace now.

The relationship between the education and residential provisions at The NCYPE gives a complete circle, says Tamasine. If Grace doesn’t have a good day at school the staff on the residential house will be told about it in case she wants to talk about it, or her staff will reward her if she does something well to boost her confidence.

Grace attending St Piers School has also been important to her family. We were on our knees by the time Grace went to The NCYPE, Tamasine emotionally admits. Grace’s medical needs were so complex and her routine couldn’t be changed that it also affected her older sister and younger brother. It gives you an immeasurable amount of relief to know that there’s always someone at The NCYPE who can point you in the right direction or give you help if you need it. The NCYPE is part of our family life – you’re certainly never alone.