The mother of a little girl who suffers from more than 100 epileptic seizures a day is looking to radical treatment for hope of a cure.
All Jenna Heary wants is for her two-year-old daughter Olivia to have to endure fewer fits, but none of her current medication is effective.
Jenna and her fiancé, Matthew Botham, both 22 and from central Preston, are setting their sights on getting their little girl onto a clinical trial to see if medical marijuana can reduce her epileptic attacks.
Jenna said: “I’m trying to get Olivia onto a trial using CBD medical cannabis oil or cannabidiol to see if it can control her seizures. In one child I heard of, it reduced her seizures by about 50 per cent.
“Olivia has 100 plus seizures every day, she’s on six different medications and a Ketogenic diet to help control them but it doesn’t work.
“I want to get her on a trial to make her just that little bit more comfortable and if it reduces her seizures that would be a real bonus. It’s our last resort.”
One night she cried so much that in the end she wasn’t even making a sound. She had gone lethargic and she wasn’t feeding so I took her to A&E.
Jenna, who is also mum to five-year-old Kailen, had a normal pregnancy and only noticed unusual symptoms when Olivia was one-month-old.
“She started having these eye flickers,” said Jenna. “One night she cried so much that in the end she wasn’t even making a sound. She had gone lethargic and she wasn’t feeding so I took her to A&E.
“They started investigations on her and she was in hospital for about six weeks. An EEG showed significant epileptic activity on the left side of her brain.”
At that point, Olivia was put in a high dependency unit as medics were recognising that she was having clusters of seizures.
“Doctors just told me that they were very worried but they didn’t tell me of the severity of it,” said Jenna.
Over the next few months, doctors tried lots of different medications on Olivia but she started to deteriorate and had to be fed through a tube in her stomach. When Olivia was nine months old, she had a serious seizure which lasted three hours.
“During the seizure, Olivia had every medication that any consultant was able to give us within 24 hours but her seizure just continued,” Jenn said.
“Afterwards doctors told us her all round development had just gone, she would never be able to walk or talk. Before the three-hour seizure, she would interact with you and recognise your voice.”
Olivia then lost her sight and lost control of her head and the trunk of her body.
Her seizures can still last up to two hours. Although Olivia is undiagnosed, doctors think she has Early Myoclonic Encephalopathy (EME), a particularly severe form of epilepsy.
“Last year, I spent nine months out of 12 with her in hospital,” said Jenna. “They said they would be shocked if she makes it until one, they told us we would lose her in the first year.
“She can go anytime, she could have sudden unexplained epileptic death where she goes so bed and just doesn’t wake up.”
Neither Matthew or Jenna can work because Olivia needs round the clock care. She only sleeps for between two and six hours a day and has to be given medication at 6am, 2pm and 6pm daily.
Jenna’s mum Michelle Heary, 49, who lives round the corner, regularly helps look after her two grandchildren.
As Olivia’s health complications developed, Jenna shut herself down to her friends in order to cope. She and Matthew have felt incredibly isolated, not knowing any other parents with a terminally ill child.
Although the stress put an enormous strain on their relationship initially, ultimately it has drawn them closer together.
Jenna said: “I had loads of friends I was a bubbly person, now I’ve got the weight of the world.
“Last year, I wasn’t able to look at other little girls. I wouldn’t wish this upon my worst enemy.
“I can’t even spend quality time with Kailen because my mum’s not trained on all of Olivia’s care.”
But on learning more about a clinical trial at London’s Great Ormond Street Hospital and researching the effects of CBD medical cannabis oil on epileptic seizures in children, Jenna and Matthew have found a new ray of hope.
They want to find a similar trial that they can get Olivia onto in the hope of reducing her seizures.
“We just try and take each day as it comes and we’re grateful for every day,” said Jenna. ”But I want to give her some extra time and to make her more comfortable. All I want is to give Olivia the best quality of life she has left.”
To help campaign to get Olivia onto a clinical trial and to follow her story search ‘Raising awareness for Olivia’ on Facebook or visit the Just Giving page directly here
Medical marijuana could change thousands of lives
A drug derived from cannabis could have a life changing effect for thousands of people living with epilepsy, according to new research published in May 2017 by Great Ormond Street Hospital (GOSH).
A trial of 120 children conducted in Europe and the USA has shown that cannabidiol – derived from cannabis but with the psycho-active elements removed – reduces seizures by nearly 40 per cent in children with a form of drug resistant epilepsy, known as Dravet syndrome. It also has the potential to provide relief to the thousands of children with other strains of epilepsy who live with debilitating seizures.
Professor Helen Cross, consultant in Paediatric Neurology at GOSH and joint lead author of the study, said: “The results of this study are significant and provide us with firm evidence of the effectiveness of cannabidiol.
“This drug could make a considerable difference to children who are living with Dravet syndrome and currently endure debilitating seizures.”
GOSH led the study in partnership with New York University. The GOSH researchers also worked closely with colleagues at research partner, the UCL Great Ormond Street Institute of Child Health.
Dravet syndrome affects one in every 40,000 children in the UK.
This is a rare form of epilepsy where, in addition to frequent epileptic seizures, children often experience behavioural problems and neurodevelopmental delay.
This form of epilepsy is difficult to treat as seizures are resistant to of the majority of anti-epileptic drugs available.