Samuel, 9, and twins, Benjamin and Oliver, 5, live in Bexhill and care for their Mum, Nicki. In 2019, Nicki, was diagnosed with Non Epileptic Attack Disorder, which means she can experience over ten seizures a day and has limited mobility, post-traumatic stress disorder (PTSD) and anxiety. This turned the family life upside down and it is now almost impossible for the family to go out together. Dad, James, has given up work to look after Nicki full time.

The boys help out around the house, know to deal with seizures and help to keep Mum smiling. They have had to learn to deal with seeing their Mum go from someone outgoing and active to using a wheelchair and with anxiety about going out. The children find it difficult as they cannot go out as a family.

Samuel, as the eldest sibling, has particularly been affected as the family no longer have visitors over to the house. The seizures can be quite violent, and they are aware that it can be scary for others to witness. This has meant Samuel’s friends can no longer come over and he finds this really hard to accept.

Nicki says; “Samuel doesn’t moan about it and finds it hard. We can’t go out as a family which is a big thing for him. They are only able to go to school and grandparents and it has affected the family dynamic. On the social side, Samuel didn’t want his friend to see my seizures and there is incontinence with the seizures. This has affected play dates and they are unable to have friends round. COVID-19 stopped Samuel going round to a friend. It’s hard for him as he can’t invite friends over.”

Coming to the Care for the Carers Young Carers service has given them something to look forward to, and something just for them. They took part in young carers activities during the school holidays. Samuel says; “The activities made me happy.”

Nicki says; “Samuel, Benjamin and Oliver loved the activities and said, `Is it Young Carers today?’ It makes them feel special, gives interaction with other children and they can do what they want to. It gave them something to look forward to and it was especially good for them to meet other young carers.”

Our Young Carers service is for all young carers, aged 5-17 years, living, attending school or caring for someone in East Sussex. Find out more and if you need support, please get in touch.