In January 2020, Kian was diagnosed with epilepsy after experiencing unusual movements and drop attacks, with his body dropping to the floor uncontrollably. He was admitted to the children’s ward at Colchester Hospital where he had an EEG which confirmed he had epilepsy, after which he was referred to the Epilepsy Team who recommended a course of medication to help control the seizures.
A few weeks later, Kian started to experience more serious Tonic-clonic seizures, involving loss of consciousness and violent muscle contractions. He started to experience around 30-40 seizures a day, spending a huge amount in and out of hospital and trying different medications. Kian was diagnosed with Epilepsy with myoclonic-atonic seizures (EMAtS) or Doose Syndrome. Some days he was experiencing up to 300 seizures a day across a 6-8 month period.
Just before Kian’s 6th birthday he was admitted to Addenbrookes Children’s Hospital, undergoing further tests and procedures to try and establish what was happening and to start a specialised ketogenic diet to help treat the seizures he was having. Kian went from being a very calm and happy boy to feeling very angry and frustrated with life. It was an incredibly stressful time for the family, with Kian and Mum Danielle being away from home so much, with Danielle saying,
“Kian’s personality completely changed, and it was so tough for him. He is very close to his Dad, but as Kian has a younger brother I would go to hospital with him and his Dad would stay at home with Ethan. Kian wasn’t able to go to school properly because of the seizures and it was also during the pandemic, so he was missing out on so much. We all really struggled. It was during our time in Colchester Hospital that the Epilepsy Nurse suggested reaching out to Spread a Smile to see if they could support us in some way.”
Spread a Smile arranged for a virtual visit for Kian with one of our entertainers, which led to more regular virtual sessions for Kian and his brother Ethan.
“Kian loves dressing up and he loves being on the sessions with the Spread a Smile fairies. Disney Princesses are his favourite and it’s his release from everything going on. He calls the fairies his Fairy Godmothers and looks forward to joining in and singing with them. He’ll talk about the sessions for ages afterwards and they have been a brilliant distraction for both him and his brother.
“During the pandemic, Kian didn’t have many opportunities for socialisation, but the virtual sessions with Spread a Smile provided him with space to explore his imagination. It’s wonderful to see how his passions and choices are supported through the sessions. The Spread a Smile team embrace him and whatever he chooses to dress up as and it means so much to him that they engage with him for who he is.
“We all love sitting down together for the monthly magic sessions as well. We laugh and have fun and it’s so lovely to see the boys having fun together. It means a huge amount.”
Kian and his family have also enjoyed some of the charity’s family events and outings.
“The team at Spread a Smile has taken care to get to know Kian and what he likes. They have invited him to some brilliant events, including theatre trips to see Frozen and Wicked and also their Winter Party. He has loved every single one of them and everyone is always so welcoming and kind. When we went to the Winter Party it was the first time we’d all been out together as a family in a long time. Watching the boys get stuck in and enjoy themselves was amazing and they wouldn’t stop talking about it for days to come afterwards. It was so uplifting and such a wonderful opportunity to step away from the day to day worries of managing Kian’s epilepsy and just have a normal, quality day together as a family.”
“Kian still has seizures every day, but the number has reduced dramatically to between 5-10. During all this time Spread a Smile has been a constant for us. Every month the boys have something to look forward to and the team are always there for us, providing a brilliant distraction and focus for fun and laughter. We don’t know what we’d do without them.”
Kian said, “I hate epilepsy, but I love Spread a Smile.”
Please help ensure we can continue to support children and young people like Kian and their families by donating today. Thank you.