Ben King nominated his wife Rachael for everything she does to raise awareness about epilepsy. Their three children all live with the condition. Their eldest son Jenson, seven, was diagnosed with epilepsy at eight months old. He has many types of seizures, and is also being assessed for ADHD. William is four and like his brother was diagnosed as a baby. He also has PICA, a condition where he craves non-food substances. He also has a lot of ASD features and sensory needs. Their three-year-old sister Darcie was also diagnosed last year with epilepsy.
“Rachael has taken all of this in her stride and we have tried together to keep positive,” Ben explains. “She’s a full-time carer, which I have to give her a lot of credit for, as I know how hard this must be. But she still keeps smiling. Not only does she look after our three children and take them to their appointments and tests - she also finds the time to want to help other people and to make a difference.”
Rachael has long been keen to spread awareness and talk about epilepsy. But in 2017 she took it up a gear. She was filmed by the BBC Three for their short film, "5 things to know if you love someone with epilepsy.” The video had over 650,000 views and was shared thousands of times all over the world. She has since had hundreds of people thanking her and writing to her for information and advice about epilepsy. Rachael was proud to hear from someone who learned what to do for someone having a seizure in public. Another American viewer thanked her, saying it had given her hope for her battle with epilepsy.
Rachael’s Facebook page "Our Epilepsy Journey" now attracts people from all over the world who message her for advice and support. As well as updating followers on the children’s progress, Rachael also makes clips giving practical advice for other people affected by epilepsy.
Rachael has also spoken and written about the children’s conditions in a range of publications, including Epilepsy Today, Educate Awards, Enable and Nursery World magazines. She has promoted Purple Day on regional radio, and is a regular in her local papers with stories of the family’s tireless fundraising.
Rachael has an engaging, hands-on approach. For a talk at the Carers’ Trust about epilepsy and seizure types, she made books and leaflets for everyone to take home. She has helped a media student to make an epilepsy documentary for her final year university piece. She started two petitions in 2017 to get epilepsy education in all settings, both in the UK world-wide. She supports the children’s school, Barnton Community Nursery and Primary, by making detailed information books about different seizures. Thanks to Rachael, Barnton has twice won national education awards from Epilepsy Action for its work supporting Jenson, William and Darcie.
“Rachael has been so excited to have been able to do media work with Epilepsy Action, and she wants to do lots more.” Ben says. “Despite all that we go through as a family, with so many appointments and hospital stays, she’s always thinking about the children and making a difference to other people. We are very proud of her and we want her to know how special she is.”