“We started out as a very ‘normal’ family; then, at four months old, Oscar had his first seizure.”
For new parents Sophie and Jay, this would be the start of a long and complicated road. What doctors initially thought was a one-off reaction to his first immunisations would later turn out to be Dravet syndrome; a rare and severe neurological condition that causes frequent, treatment-resistant seizures. Sadly, one of these seizures would later trigger cardiac arrest, leaving Oscar with brain damage at just three years old.
As they adjusted to the new and complex care that Oscar required, Sophie and Jay also welcomed two more children – Sofia in 2021 and Luca in 2022. “Devastatingly, both Sofia and Luca were both diagnosed with Dravet as well,” said Jay.
For many families, having just one child with complex needs will alter their lives dramatically; Sophie and Jay now had three, each with different symptoms and care needs. “We have a lot to keep on top of,” said Sophie. “Oscar and Sofia start their medications around 6am, and then they need readministering every few hours throughout the day until they’re back in bed. Luca, meanwhile, has all the same needs as any other newborn. It’s pretty much non-stop.”
The family was referred to Demelza for support shortly after Oscar came home from his first hospital admission and they haven’t looked back since. For Sophie and Jay, Demelza’s care at home visits from healthcare assistant Hettie are a chance to unwind from the constant complex care. “The sessions are so creative, the kids have had everything – water play, arts and crafts, little outings to the park. They love it, their faces light up when Hettie gets here,” said Jay. “It’s also great because we don’t necessarily see the kids’ development from day to day – so having an outside pair of eyes from Demelza to point out milestones is a really positive thing for us. It’s good to celebrate when we can.”
Demelza’s Community Team Lead Beth has also supported the family during stays at the Tunbridge Wells Hospital at Pembury. “Having someone to lean on when one of the kids is in hospital (let alone two or even all three of them) makes such a huge difference,” said Sophie. “We can’t be everywhere at once and it can be a massive strain to worry about what’s going on at home, or in another hospital room – so getting that on-the-spot respite from Beth, who can sit with Oscar or Sofia while I grab a coffee and recharge for twenty minutes, is fantastic.”
“I think what’s different about Demelza is how personal it is,” continued Jay. “When we sit down with Hettie or with any of the team, it’s about us as a family. We can get the advice we need on clinical care, but we can also talk about fun and play for the kids, accessible activities to get the best out of them, we can talk about what’s hard at the moment. No matter who you speak to at Demelza, they have a passion for what they’re doing and they want you to have the best experience – they bring their services to life in a way that’s different than anywhere else we’ve ever been. We would never want to be without them now.”