"She helped us see what was possible": How one nurse supported a family through an epilepsy diagnosis

When 13-year-old Matilda was diagnosed with epilepsy in 2022, it came as a huge shock to her family.

With no history of epilepsy in the family, her mum Sally remembers feeling overwhelmed by the uncertainty of what lay ahead.

"It was a massive worry," said Sally. "We didn't know what this would mean for Matilda or how we would adapt as a family."

Shortly after her diagnosis, the family was introduced to Sophie Gilmour-Ivens, senior paediatric specialist nurse, who would become a constant source of support throughout their journey.

From their very first meeting, Sally says Sophie made an immediate impact.

"She put me at ease straight away," she said. "I felt like I could ask her anything, at any time. Knowing she was there was a huge help."

What stood out most to the family was Sophie's ability to connect not only with Sally and other family members, but with Matilda herself.

"Sophie always spoke directly to Matilda and included her in conversations about her care," said Sally. "As a parent, that's so important. A lot of healthcare professionals would naturally direct the conversation towards me, but Sophie made sure Matilda's voice was heard."

As Matilda grew older and became more independent, new challenges emerged. Like many teenagers, she wanted to spend time with friends and enjoy activities away from home. For her family, however, that independence brought understandable concerns.

"We worried about what would happen if she had a seizure while she was out with friends," Sally explained. "It was difficult not to think about the worst-case scenarios."

Recognising those concerns, Sophie arranged epilepsy awareness and seizure response training for Matilda's friends, giving them the confidence and knowledge to support her if she ever needed help.

For Matilda, the impact was life changing.

"It made me feel much more relaxed," she said. "I could go out and do the things my friends were doing without worrying so much. Knowing they understood what to do made a huge difference."

One moment that particularly stands out for the family was when Matilda was given the opportunity to go on a school trip to France.

While excited for her daughter, Sally admits she was hesitant.

"I was worried that if something happened, the teachers and people around Matilda wouldn't know how to help her," she said.

Once again, Sophie stepped in. She organised epilepsy training for the teachers and staff accompanying the trip, helping them understand both the condition and what action to take in an emergency.

"It gave us so much reassurance," said Sally. "Having somebody with Sophie's expertise deliver that training really helped staff understand the seriousness of epilepsy and what they might need to do."

Sally, who is a nurse herself, says that despite her professional experience, nothing could have prepared her for seeing her own child receive a diagnosis.

"I've seen similar situations throughout my career, but it's completely different when it's your own family member," she said. "The emotions are very different."

Reflecting on the journey since Matilda's diagnosis, Sally believes Sophie's support has been invaluable.

"She has been there through every stage. Not only has she helped Matilda live her life with confidence, but she has helped our whole family cope with the challenges that come with an epilepsy diagnosis.

"Sophie didn't just support us medically. She gave us reassurance, confidence and hope. She helped us see what was possible, rather than focusing on what might go wrong."

Sophie said: "When a young person is diagnosed with epilepsy, we're not just supporting them medically, we're supporting their whole family as they adjust to a new reality. Matilda and her family have shown incredible strength throughout that journey and it's been a privilege to be part of it.

"Through our Lifelong Care strategy, we're committed to providing personalised care that supports people at every stage of their life. For me, that means taking the time to understand what's important to each family and helping young people like Matilda build the confidence and independence to live their lives to the fullest."

Today, Matilda continues to grow in confidence and independence, supported by a healthcare professional who helped turn a frightening diagnosis into a journey that the whole family felt able to navigate together.