“We’re living in lockdown every day of our lives”

2020 is the year coronavirus changed the world as we knew it, but some families were already living through their own pandemics, Ilmarie Braun tells Sarah Sinclair.

When Covid hit the UK earlier this year, someone asked Ilmarie Braun if she was scared.

“I’ve been scared every day since Eddie got his diagnosis,” she says.

“The reality of him living with intractable epilepsy is that his condition is life limiting, we don’t know how many years we are going to get together.”

Eddie, her five-year-old son has a condition known as infantile spasms, or West syndrome, and has been having seizures since he was seven months old.

As the country went into lockdown, and people’s lives were disrupted by not being able to travel, or go to the pub, Ilmarie couldn’t help but compare it to her and her husband Alex’s realisation that their lives would never be the same again.

“We’ve been living in a type of lockdown already,” she continues.

“It’s funny when people say things like I can’t travel. That was something we went through when we realised we would never be able to take Eddie on a longhaul flight – what if he had a seizure mid-air?”

Eddie’s condition is known as ‘neurologically catastrophic’ and the quicker the seizures are brought under control the better the outcome for the child. For the next few months of his life he was treated with strong medication to try and stop them.

“Within quite a short space of time he was on a cocktail of strong drugs and he was just a zombie – either asleep, or awake and having seizures – he stopped smiling and interacting,” says Ilmarie.

“With each new drug you hope that this will be the one that works. Nobody tells you that if the first two antiepileptic drugs don’t work the likelihood of any others working is really low.”

Brain surgery wasn’t an option as Eddie had pre-existing damage to his brain and although he took part in a clinical trial for the ketogenic diet it proved ineffective at managing his seizures.

“Unfortunately, with Eddie we never gained control no matter what we tried,” says Ilamrie.

“We were just surviving and life was pretty crap to be honest, for Eddie and for us as his family.”

When Ilmarie’s sister sent her an article she had read about medical cannabis, at first she was offended.

“I had preconceptions that cannabis is recreational and I was quite offended that anyone would think that is something we would do,” she admits.

“But actually, when you watch your baby having seizure after seizure and nothing is working, you do have to start thinking differently.”

At the time full extract cannabis, containing THC was still illegal, so they bought a CBD oil called Hayley’s Hope from America. Eddie’s pediatrician wouldn’t prescribe it, but he supported the family to wean Eddie off his other medication when his condition started to improve and kept detailed notes in his medical records.

“One by one, we slowly weaned him off everything and Eddie came back to us,” says Ilmarie

“He’s profoundly disabled physically but he’s such a happy little boy. He has got his own personality and he’s here now whereas for a long time, he was just existing.”

But Eddie’s condition is known to progress with age and he started to have other seizure types, such as tonic and myoclonic as well as the spasms. Ilmaire and Alex felt he would see more improvement on THC, and took the route other families in their situation had, with a referral to a doctor in Holland.

“It never occurred to me that the doctor in Holland would say no,” she says.

“She said she couldn’t keep taking English kids. We were left in a position where we really didn’t know what we were going to do next.”

Around the same time another UK mum was campaigning to be allowed to bring her son’s medical cannabis prescription back from Canada. Ilmarie joined her and other parents in the fight to change the law.

“It all moved really fast, for a couple of weeks it all went crazy. I was on TV, in the papers it all felt really positive,” she remembers.

 “My local MP got me an appointment with Nick Hurd who was setting up the RESCAS panel and he assured me that it was for children exactly like Eddie.”

However, the panel refused Eddie’s case on the grounds that he had not yet tried epidiolex, despite the fact it had not yet been approved in the UK.

He started treatment with the drug around November 2018, with Ilmarie and Alex hopeful that he would soon be able to access a prescription for full extract cannabis on the NHS.

Their requests were turned down at the first hurdle.

Over a year later and Eddie now has a private prescription, which the family is able to fund thanks to generous donations from friends and family.

“The Bedrolite has been amazing for him, since he has been on it we haven’t had to call an ambulance and he hasn’t had any rescue medication,” says Ilmarie.

“The biggest thing was that he started to sleep through the night, which he had never done before. Sleep is huge for us as his parents but also for Eddie developmentally.”

Although Eddie is still having between one and three seizures an hour, Ilmarie believes it is the cannabis which is preventing them from being catastrophic.

“Unfortunately with infantile spasms if you don’t get them under control, 30 percent of children go on to develop Lennox Gastaut syndrome,” she says.

“The cannabis is keeping him stable and safe, but he has brain damage, and he will always have seizures. Even if it’s only helping 50 percent, it’s more than anything else has ever achieved.”

As members of the End Out Pain movement, Ilmarie and Alex are continuing to fight for access to medical cannabis on the NHS. But despite it once feeling so positive she now feels that day is as far away as ever.

“It’s really demoralising now, there are blocks everywhere and it feels like it is never going to progress,” she says.

“There is so much going on in this country now and everybody is worrying about what the effects of pandemic might be on them, financially and in terms of their own health.”

She continues: “Lockdown has made fundraising hard for the parents and a lot of the families are really panicking about running out of money, everyone is really upset.

“We already know that we might not get that long with our children, to have this added emotional stress and anxiety is really unkind.”

The Government could do more, she says, to help these families.

“We don’t know what the future holds, but we know it isn’t going to be easy,” adds Ilmarie.

“We are already scared every day, if there is something out there that is helping we shouldn’t be scared about how we are going to get access to that – that is the most heartbreaking thing.”