Isabella's Story

 “Anything can trigger a seizure, on a bad day they can easily be in double figures,” says Nicola. “She can end up with black eyes, a busted lip. You have to watch her all the time, and just deal with it.”

After a normal pregnancy and labour, Nicola had no reason to worry when she and husband Robert took baby daughter Isabella home to meet big brother Oliver, then five.

But at two months old Isabella began to have seizures. She was referred to Evelina London Children’s Hospital where, three months later, her parents were told the devastating news that Isabella had a serious birth defect known as neuronal migration disorder and epilepsy.

“We couldn’t have imagined it would have been so life-changing for us,” says Nicola. “The epilepsy is the life-threatening part but it’s the disabilities and learning problems that are more life-changing. Now it’s normal for us.”

At four, Isabella has very limited mobility and cannot speak, although she can express emotions. Watching her wriggling about in the sensory play room at Demelza’s Sittingbourne hospice, entranced by the colours and bubbles, she is clearly enjoying herself. Despite medication, the risk of a seizure is never far away. “Anything can trigger a seizure, on a bad day they can easily be in double figures,” says Nicola. “She can end up with black eyes, a busted lip. You have to watch her all the time, and just deal with it.”

With two other children to think about – the couple now have another daughter, two-year-old Emily – night times can be particularly tough. “Sometimes Isabella cries uncontrollably for hours, and just cannot be comforted. It will be 2am, I’m trying not to wake the other two, my husband’s on a late shift, and I can’t cajole her, say stop crying and you can have a treat.”

Understandably then, the chance of a regular short break at Demelza Kent, which opened in 1998, makes a big difference. Nicola and Rob found out about the respite care service from another Demelza family, who they became friends with when both their children were in hospital.

“We all love it!” says Nicola. “It’s amazing for everybody. It’s lovely for the other two because I am doing nothing other than playing with them, I don’t have to cook, clean, look after Isabella.

“Oliver loves the soft play area, Emily loves that there are toys everywhere – dolls, puzzles, books. And she is actively encouraged to make a mess in the art room which I just wouldn’t have time to clean up at home.

“Sometimes it takes Isabella a night to settle in, but she enjoys the sensory room and the hydrotherapy pool and taking a long bath. It gives her one to one time too, with the care team.

“The best thing for me is I can just go upstairs to our room. I can put the other two to bed and really relax up there – for me that’s actually more relaxing than going out.”