Ruby’s story

Nine-year-old Ruby has won September’s Epilepsy Star Award. Ruby is an amazing big sister to her six-year-old brother Leo, who has several disabilities and was diagnosed with epilepsy last year. She supports her brother, who has autism, on a daily basis and always puts him before herself. Ruby’s dad Josh, shares her story:

“Ruby has always been caring, loving and puts everyone before herself. I think this has come from having a brother with special needs. Every day, she plays a crucial role in his life, offering support and understanding to help him. She uses a calm and soothing voice that helps calm him. She is patient, assists him and is able to read his cues when he wants something or needs help; she knows when he’s feeling overwhelmed or anxious and can help him regulate.

“Her depth of understanding allows her to communicate with him in ways that transcend words, using gestures, expressions and even sounds that resonate with him. She is a calming presence in moments when he struggles. She often holds his hand or gives him a reassuring hug, helping him feel secure. Leo feels so safe with Ruby, he often becomes upset when she leaves him so Ruby is always wary of what she is doing and if Leo is going to be okay when she is not there.

“If Leo has a seizure, Ruby knows exactly what to do. Her job is to time the seizure and get shoes for everyone to be able to get Leo the right medical help he needs.”

Josh continued: “I am incredibly proud of Ruby for winning the star award. She demonstrates a level of maturity and understanding beyond her years. She not only engages with him in meaningful ways but also knows how to respond during difficult moments, particularly when he has seizures. This award is a testament to her kindness and dedication, and it highlights the amazing bond they share. I couldn’t be happier to celebrate her accomplishments and the positive impact she has on her brother’s life.”

Ruby was nominated by Josh’s friend Charlotte. She wanted Ruby to be recognised for the incredible daily support she provides Leo.

She said: “Ruby is amazing at supporting Leo. She adapts how she plays with him, protects him and even sacrifices partaking in certain activities that other children her age may take part in, because of her younger brother’s disabilities.

“To Ruby: the unyielding support, the adaptions and the sacrifices you have made for Leo are incredible. Nevertheless, we recognise Leo’s conditions’ impact on your life and never feel as though you are unable to take some time out to take care of yourself. As someone with epilepsy, I know you are just as affected by Leo’s conditions as Leo, just in a different way.”