Family speak of heartbreak after son, 18, dies suddenly in sleep

The family of a teenage boy have been left heartbroken after he was found dead after suffering a suspected epileptic seizure – and are hoping to raise awareness of the condition.

Craig Darce, 18, died suddenly at his home in Wardleworth on 29 August, with his two cherished dogs, Harold and Papi, by his side.

Craig was studying IT at Hopwood Hall College, and was in the process of emigrating to Louisiana in the United States with his mum Amy, stepdad James, and his six younger siblings.

The former Whitworth Community High School student had been diagnosed with epilepsy aged 15, a condition which also affects Amy, 37.

Epilepsy is a common neurological disorder which affects people of all ages and is typically characterised by unpredictable seizures.

Craig’s childhood dream was to become a pilot, but he had to find a new goal after being diagnosed with epilepsy.

Stepdad James, who Craig called dad, added: “That was the first time I ever saw my son angry. I never saw him so angry as when he realised that wouldn’t happen.”

Craig then set his sights on working with computers – and “was so ready” for his new life in the states, says James.

The family had applied for visas last July to move to Baton Rouge in Louisiana with James, a US citizen. However, their application was delayed due to the pandemic and the subsequent travel ban.

On the day of his death, Craig had suffered one seizure in bed before falling asleep. Amy had checked on her first-born – as she did each time – before going back downstairs.

Several hours later, when Amy went to check on Craig, she found him unconscious and he was tragically pronounced dead. It is thought Craig may have had a second seizure shortly after the first.

Amy said: “Craig was so protective; he was a mummy’s boy. He was a gamer and loved his PC.

“He didn’t want epilepsy to define him.”

 

 

Electrician James, 36, said: “Craig was a really good-hearted individual. He was extremely independent, very unique, complex. He was very protective as a brother and was everything you could want in a man or child. He was growing up to be a very refined gentleman and looked forward to life.

“He was everything you expect in an 18-year-old; he could be a little mouthy, a little cocky. He was a god-send as a son and as a man, very passionate and compassionate.

“He tried to take care of himself and was trying to better the world.”

Amy and James say the family now want to help raise awareness of sudden expected death with epilepsy, which is known as SUDEP.

There are more than half a million people with epilepsy in the UK. Around 600 people die each year due to SUDEP, according to the Epilepsy Society.

Although the percentage of the population who are affected by SUDEP is relatively low, every death due to SUDEP is thought to be potentially avoidable.

 

 

Whilst no-one knows why SUDEP happens, it is thought to happen during or following a seizure. Some researchers think that a seizure causes an irregular heart rhythm whilst other research has shown that breathing difficulties following a seizure can lead to death.

More information about SUDEP can be found here.

“We don’t want anyone else to be in the position we’re in,” Amy said. “It’s sh*t; it really is.”

A crowdfunding appeal has also been set up to help the family pay for funeral costs – and to give his siblings a day out. Also trying to help raise funds for Craig's funeral is Their4U Fundraising by Rochdale AFC Military Veterans.

Amy added: “These kids need a reason to smile, even if it’s only for a few hours.”

To donate, please visit:

• www.gofundme.com/f/give-craig-a-good-send-off