Three young children from Chichester have been recognised with a national award for their extraordinary support for their mum, who lives with epilepsy.
Jacob, aged nine, Rosemary, eight, and Benny-Lee, seven, have been named Epilepsy Stars by the charity Epilepsy Action after being nominated by their mother, Crystal.
Crystal has lived with epilepsy since childhood, and her children have grown up witnessing her seizures. She said: “I have had epilepsy since childhood, so my children have always had to see their mummy have seizures. It got worse whilst I was pregnant, and has been at its worst over the last year.
“I have been having seizures every day – sometimes four or five times. I have been to hospital a lot.
“All three of my children have been absolutely amazing. They’re just typical children – Jacob loves football, Benny-Lee is a huge WWE fan and Rosemary loves makeup and dollies. Yet, they’ve been through so much.
“Their dad, Ben, taught the children how to help me when I have a seizure, so they’re prepared for the situation.
“Often when I have a seizure, they will go and get my phone and start calling for help. On some occasions they have even called an ambulance for me – they’ve also asked strangers for help.”
The children have shown remarkable courage in public situations too. “One day, Jacob and I were in Tesco. I had a seizure, and Jacob immediately went and got the attention of the a lady working there. He told her my name, my age, and where his grandad was, who could come to help. It was absolutely packed outside the shop, so Jacob did really well.
“Normally, Rosemary hates talking to people she doesn’t know, but she’s pushed herself to ask for help when we’re in a tricky situation. In one instance, Rosemary and I were home alone, as her brothers were at school. I had a seizure, and so she went outside and managed to flag down someone she recognised who works with her dad, who happened to be around. She then used my phone to call her daddy and nanny.
“I live really close to all my other family, which is really helpful for me and the children. If I have a seizure, often Benny-Lee will support my head, whilst Jacob will run next door to get his Grandad, and Rosemary will call her nanny.”
Crystal added: “I feel so bad that the children have to see me so poorly but they are absolutely amazing, and they are always there to help me.”
Rebekah Smith, chief executive at Epilepsy Action, said: “We’re so pleased to give this month’s award to three fantastic children. At such young ages, Jacob, Rosemary and Benny-Lee have shown incredible maturity, staying calm in what can be a really distressing situation – no one deserves to see their parent so poorly.
“The children are leading examples of how you can be an epilepsy ally, and be confident in delivering seizure first aid. Having just celebrated Purple Day, we’re keen to keep up the momentum of driving awareness of epilepsy and the misconceptions and misunderstandings that can come with the condition. It takes just a minute of your time to familiarise yourself with Epilepsy Action’sCARE acronym, which stands for Comfort, Action, Reassure and Emergency.
“We understand that the thought of witnessing a seizure can feel overwhelming, but that’s exactly why knowing the basics of seizure first aid is so important. With the right knowledge, people are better equipped to stay calm and respond effectively in these moments. Crystal’s children demonstrate just how powerful that preparedness can be. Jacob, Rosemary, and Benny-Lee are truly inspirational, and we hope their remarkable story encourages others to learn more about epilepsy and feel confident in supporting someone experiencing a seizure.”
Epilepsy affects around one in every 100 people in the UK, with around 80 new diagnoses each day. In the South East alone, more than 77,000 people are living with the condition. Epilepsy Action continues to campaign for improved services and greater awareness, offering support through its helpline and nationwide network.
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