Dravet Syndrome: couple had to resuscitate daughter, 9, more than 100 times due to rare condition

A distaught couple were forced to resuscitate their daughter’s “limp and lifeless body” 100 times due to a rare condition.

Devon couple Sam and Mike Slocombe have had to repeatedly revive their nine-year-old daughter Paige due to a rare condtion known as Dravet Syndrome.

The young girl has been rushed to hospital multiple times in her life, and her family are now trying to raise awareness of the debilitating condition.

Paige was diagnosed at one-year-old

The family’s worries began when Paige began suffering from multiple seizures and was rush to the hospital in an ambulance multiple times.

Sam said: “Paige lived a normal life up until she was seven months old when she had her first seizure whilst in the bath.

“I had never seen a seizure before, and I thought she was going to die. I carried her limp and lifeless body into the bedroom and called 999.

“Paige was rushed to hospital where a huge team of doctors battled to save her life. She was resuscitated numerous times over the next two hours.

“Paige spent a few days in hospital recovering and was sent home with a diagnosis of febrile seizures. A few weeks later she suffered another seizure at home and was rushed to hospital.

“This time the seizure was so tough on her little body that her airways collapsed, and she was put into an induced coma and sent to intensive care.”

At just one-year-old, she was diagnosed with Dravet Syndrome.

The condition is a severe form of epilepsy and can often be treatment resistant, meaning that suffers are often left without medical options to treat the syndrome.

Dravet Syndrome is officially classed as a rare condition as it affects only one in every 150,000 live births.

Family have been forced to resuscitate their daughter 100 times

Paige’s young life so far has been fraught with medical issues, with the young girl and her family prepared for any eventuality as a result of her condition.

Sam said: “Paige stops breathing with her seizures, and wherever she goes, her medical bag goes with her.

“It contains very potent drugs to try to stop her seizures, oxygen, resuscitation equipment, a SATs monitor to check her heart rate and oxygen levels, and a suction machine. These things play a vital role in keeping Paige alive.

“I have probably resuscitated her myself over 100 times.”

Paige also experiences mobility issues and problems with swallowing, and the nine-year-old has also been diagnosed with global development delay and autism.

Innovative implant changed Paige’s life

In 2018, Paige had a Vagus Nerve Simulator (VNS) implant fitted, which mum Sam has transformed her life.

A VNS device sends a small electric shock to the brain which can prevent a seizure from happening.

Sam explained that, while her daughter does still suffer from seizures from time-to-time, the device has dramatically cut down how many her daughter was experiencing on a daily basis.

She added: “Paige has a reg flag with the local ambulance team due to the severity of her condition.

“Because she stops breathing, the air ambulance is usually required to attend to each call out. She spent four years having seizures every two weeks and either being airlifted each time or, if she was too unstable, having the air ambulance doctors take her by road ambulance.

“Paige is incredibly strong and resilient and has for sure made me the person I am today. I am in awe of her positively and strength. I am so grateful she’s still with us.”

Family wants to raise awareness

The Slocombe family are using their harrowing experience to join with charity Dravet Sundrome UK to raise awareness of the condition which has drastically impact their daughter’s life.

Sam said: “Greater awareness of Dravet Syndrome would make such a difference to families like ours.

“Having a child with Dravet is quite scary. When your child is fighting for their life, you want a professional to take you under their wing, put you at ease and explain what will happen.

“I have probably met just one or two medics over the last nine years of Paige’s life who knew what Dravet was, and we have met so many.

“I feel it’s important to raise awareness so that children who aren’t yet diagnosed get the opportunity to be discovered and get an early diagnosis. I really believe Paige is doing as well as she is due to having an early diagnosis, the right drugs and best medical care.”

The charity has worked to support more than 550 families financially, as well as providing emotional and practical support since it was launched in 2008.

Galia Wilson, Chair and Trustee of Dravet Syndrome UK, said: “Scientific understanding of Dravet Syndrome has improved significantly during the past decade.

“The availability of genetic testing has helped increase diagnosis and now there are newer, more effective treatments available too, such as fenfluramine, which has been recently recommended by NICE.

“But wider awareness is needed to bring attention to these advances if they are to bring real-life benefit to as many patients and their families as possible.

“We hope that by shining a light on this catastrophic condition more families can get an early diagnosis and the vital support that they need.”