A REDDITCH mum, whose daughter has a rare life-limiting form of epilepsy is backing a UK campaign to raise awareness of the condition.

Lyz Cund’s three-year-old daughter Josie-Mae was diagnosed at the age of one with Dravet Syndrome.

Josie-Mae suffered months of seizures and blue light ambulance trips to hospital and has been resuscitated 20 times.

Lyz, aged 38, said: “The fact that Dravet Syndrome is not well known or understood, even in hospitals, has made things even tougher. 

“There have been times when I’ve taken Josie to A&E and the children’s ward and I’ve explained to medics that she has Dravet, rather than another type of more common epilepsy, but they haven’t heard of it, so I’ve felt completely dismissed, they’ve looked at me like I’m mad.

Redditch Advertiser: Josie-Mae. Josie-Mae.

“When you are in an emergency situation, and your daughter’s life is at risk, it’s just so stressful to be also having to explain what her condition is at the same time. 

“I’ve had to really stand my ground in order to be listened to and taken seriously.”

Josie-Mae is currently receiving a new treatment for Dravet Syndrome, called fenfluramine and Lynz says it has reduced the number of seizures she experiences.

“Before, she was having weekly seizures,” said Lyz.

“Now it’s more like a third of those seizures. Her seizures have changed too, they have become shorter.

“It means that she can go to school or on days out the day after a seizure, instead of being too tired.”  

Lynz added: “This year Josie has started walking and is walking into the school playground by herself this month, it makes me so proud! 

"And her speech is developing.  

Redditch Advertiser: Josie-Mae. Josie-Mae.

“Josie has delayed development and that upset me so much.

“She was ahead of her peers at one year – she could say 20 words and was sitting up at 6 months. It was so hard to accept when she started losing words.”  

Lyz said “early diagnosis is absolutely key” as once a diagnosis is made, there are treatments and medication that are only available to Dravetr patients.

“Before Josie was diagnosed, because of a lack of awareness, she was on a type of anti-seizure medicine - a sodium channel blocker- which aggravated the condition, said Lyz.

“It was an epilepsy consultant at Birmingham Children’s Hospital that spotted the signs of Dravet Syndrome and made a diagnosis.” 

Lyz is among those helping charity Dravet Syndrome UK to spread the word by sharing their stories.

Dravet Sydrome UK is the only UK charity dedicated to supporting those with the syndrome, providing help to more than 550 families.

Galia Wilson, Chair and Trustee, 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.”

To find out more about Dravet Syndrome, visit www.dravet.org.uk or email the charity at: info@dravet.org.uk