Amy

Amy was diagnosed with epilepsy shortly after her first birthday. When she was about six months old things started to happen, her Mum remembers. She started twitching her eyes but everyone thought she was ok. When she wouldn’t feed or drink Amy saw a doctor who thought she had an infection.

After that time her eyes started rolling which was really traumatic, Amy’s Mum recalls. When she got older the doctors put her on steroids and other medications which to begin with increased her seizures.

When Amy was a baby her parents were told it was unlikely that she’d walk or talk because of the learning difficulties she had in addition to her epilepsy. But she was walking when she was nine months. She also started to say some words although as she got older she’s begun to lose some of her speech which I think might have been due to her epilepsy medication.

But Amy’s epilepsy and associated difficulties was hard for her parents. Her Mum has Multiple Sclerosis and her own health concerns which have led to her using a wheelchair. They divorced when Amy was young.

Amy’s seizures became worse as she got older, having a variety of different types from absences, to jerks or tonics where the persons body, arms or legs can make sudden stiffening movements.

Amy attended a special needs school but it was not suited to Amy’s growing complexity. I wondered what would happen if she had a really bad seizure and if anyone was watching her as there were lots of other children at the school with different problems, her Mum explains.

Amy’s Mum found about The National Centre for Young People with Epilepsy’s (NCYPE) St Piers School through a respite carer who worked with Amy. I felt there was nowhere else that would be well suited to help Amy. It was hard work to get Amy there but it’s such a relief that she’s in the best place to help her with her epilepsy. Amy also has autistic traits which St Piers School is able to accommodate into her individual learning plan.

A year or so after Amy joined St Piers School as a day student her Mum’s Multiple Sclerosis worsened. Amy’s Mum made the difficult decision to send Amy to live in a children’s home although she makes sure that she still has regular contact with both St Piers School and the children’s home. I would love Amy at home all the time but she fits in well at her school, she has a proper role now and she’s developing well.

The staff at St Piers School ensure that both Amy’s Mum and the carers at the children’s home are fully involved in Amy’s education. I ring her every day to see what she’s done at school, her Mum explains. Amy has difficulty with her speech but is able to say some words and uses signs to express herself. Sometimes Amy copies what you say or often doesn’t say much – then you remember that in many ways she’s just like any other 16 year old, Amy’s Mum says.

Amy is also able to access help from The NCYPE’s onsite medical and therapist staff which has helped with controlling her medication and working on her speech.

Amy’s teachers are really supportive and involve me fully. I can see some really positive changes in Amy – she’s with her peers now and interacts which is great as before she wouldn’t mix with other children. It’s great.