Biscovey Primary Academy in Cornwall scooped the July Epilepsy Star Award from Epilepsy Action for the outstanding support they’ve given to five-year-old Grace in her first year at the school. Grace’s mum Lyndsey nominated the school for being ‘brilliant from the get-go’, helping her daughter to thrive in the classroom, making sure she has had a brilliant first year ‘full of learning and fun’. She said staff took a proactive and holistic approach from day one, holding staff training sessions with Grace’s epilepsy nurse, involving Lyndsey in all aspects of safety planning and also inviting her to share her family’s first-hand experience of how to recognise Grace’s seizures.
She said: “Thanks to Grace’s class teacher, Grace has been able to take part in everything the same as her friends. From climbing the climbing frames in the playground, going on school trips, and being given a big speaking role in the Christmas play, taking part in sports day and taking extra care to keep her cool on hot days. They have also kept me informed if Grace seems ‘not herself’ and have been flexible with me in taking her home for an hour or so for a rest and then bring her back to school if needed. As a family we have been allowed the most peace of mind possible in navigating Grace’s first year of epilepsy alongside her first year at school. She has recently ‘graduated’ from Reception year and has had a brilliant first year full of learning and fun. This award is a way of recognising the school’s exemplary care of the situation and say thank you to all the staff.”
Head of School, Miss Bullock, said they were delighted to win the Epilepsy Star award in recognition of the school ensuring Grace had a smooth transition into her first school year. “We understand the impact that living with epilepsy can have on young people and their families. Therefore, when learning of Grace’s diagnosis, we wanted to ensure that all staff were trained and prepared to support her from the very start. It has been wonderful seeing Grace’s progress this year and watching her thrive both academically and socially, enjoying all that school life has to offer. It is our mission to make sure that all children, regardless of any barriers they face, have a positive start to their education and receive ongoing support to allow them to thrive throughout their primary school journey. We look forward to continuing to support Grace.”
Grace had her first febrile seizure in March last year and started to experience them more regularly, leading to her diagnosis. She has focal and generalised seizures which are now generally well controlled with medication, but she has had a breakthrough seizure at school and her family needs to take emergency medication with them everywhere they go. Lyndsey said it’s been a long journey coming to terms with her diagnosis but they’ve made sure they keep Grace informed about what she is going through.
“We told Grace that everyone has electricity in their brain and sometimes she gets a bit much which makes a seizure happen. I’m sure she might want a better explanation one day but for now she seems to accept that. She takes it all in her stride. For us, after the initial relief of knowing what was happening to her, it starts to sink in over time what epilepsy could mean for her as she grows up and what it can look like at different stages of her life. As a four-year-old, she is always supervised but is fiercely independent, so we do wonder what challenges will arise in future in managing her safety and independence. She wants to be a police officer when she grows up.”
She added: “It makes me think about when my children were babies and I had anxiety about safe sleeping, then when they get to a certain age you stop worrying about that. But with a child with epilepsy you are right back to worrying about sleep, checking their breathing and temperature as you walk past their room etc. It’s difficult to relax in the evening when the kids are in bed upstairs and you are worrying you have missed a seizure.
“As a parent, you are just on high alert a lot more than other parents. If we’re in a secure soft play area for example, it used to feel ok to not see the kids run past for five minutes, now you think of how much can happen in that time. If she was having a seizure, how long would it take me to find her? Grace takes part in a lot of clubs like Beavers, gymnastics and swimming. It’s remembering to explain to new club leaders what to look out for. I often stay nearby or even volunteer at the clubs as I am the only one with epilepsy training there. With her swimming lessons I watch her very closely just in case.”
Lyndsey said Epilepsy Action has been a big help both for the whole family in helping them to come to terms with Grace’s epilepsy. “During the diagnosis stage, I found the Epilepsy Action website full of things to answer my worries at the time. Some things that were new to us seemed ‘normal’ for epilepsy and so we felt less alone. Now I found there are great resources for Grace, such as the cartoons which explain seizures to her. I can see already there will be resources we will come back to as she gets older and asks more questions about epilepsy.”
Rebekah Smith, chief executive at Epilepsy Action said: “We’re delighted to recognise the outstanding support Biscovey Primary Academy has provided for Grace, particularly in such a formative time in her first year at school. Epilepsy can have such a profound impact on the whole family, and so it was particularly great to hear they have kept them fully involved and informed in all aspects of her education and safety.
“We hope that other schools are inspired by Biscovey Primary Academy to see just what can be achieved by taking such a proactive, collaborative and holistic approach to a child’s education. By equipping staff with training, knowledge and compassion, we can collectively ensure children like Grace are not defined by their condition but given a supportive environment which allows them to shine and live to their fullest potential.”
You can nominate someone for an Epilepsy Star Award now.
