Elliott's Story

"Demelza is somewhere to escape, it’s a comforting place to come. I get to be a parent, not just a carer.”

For Will and Georgina, time at Demelza is time to just be mum and dad.

“Demelza is somewhere to escape, it’s a comforting place to come,” explains Will. “I get to be a parent, not just a carer.”

Their four-year-old son has a brain disorder so rare he is the only person in the UK to be diagnosed with it. DNM1 gene mutation causes epileptic encephalopathy, leaving Elliott severely disabled and needing round-the-clock care.

The family, from Kent, relies on specialists in the UK, USA and Australia working collaboratively on treatment options. Most recently, Elliott has undergone deep brain stimulation surgery in the hope they will be able to reduce the level of sedation needed to control his involuntary muscle movements.

“The aim is less medication, and less distress for him,” says Will. “We would love him to be awake more, and able to stay relaxed long enough to have a cuddle on the sofa before bedtime.”

The Kent couple also have a toddler daughter, Grace, and the whole family enjoy short breaks at Demelza’s Sittingbourne hospice, as well as coming every Sunday to use the hydrotherapy pool – something Will particularly appreciates. “We’re not able to do typical father and son things like kicking a ball around the park, so having that instead is really important.”

The family found out about Demelza through the continuing care team at Medway hospital. At first Georgina wasn’t too sure. “I thought Demelza must be all about end of life care. We came along and realised it wasn’t like that at all.

“I remember the first time Will and I left Elliott and went to Bluewater – it was the furthest I had ever been away from him.

“Now we have Grace and she loves the soft play and sensory room – she can use all the same facilities as Elliott. We can sit and have a cup of tea knowing Grace is happy pottering about and that Elliott is being looked after.”

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