“You always need to have hope” – Thousands raised to help nine-year-old girl access medical cannabis

The parents of a nine-year-old girl with severe epilepsy have raised almost £20,000 to fund medical cannabis for their daughter – in an effort to avoid putting her through a second invasive brain surgery.

Millie Gillan, nine, who is diagnosed with refractory epilepsy, began having seizures at four months old. 

The last nine years of her life have been a constant struggle of trying and failing to get her seizures under control, at her worst suffering up to 200 episodes a day.

“It’s been a long, hard battle for Millie,” says dad, Steven Gillan.

“She can have good weeks and good months and then she can have a really, really bad few months.”

At the age of just two, Millie underwent a lobectomy, a type of brain surgery to identify the abnormality in the brain and remove the frontal left lobe. 

Despite the invasiveness of the procedure, at the time Steve and Millie’s mum Marelle thought the operation was their daughter’s best chance at having a decent quality of life.

But devastatingly despite an initial improvement, her seizures began to worsen again.

“Millie has never been seizure free, but things were more manageable after the operation,” says Steven.

“Then, gradually the seizures started to come back and we’ve struggled to get on top of it since.

Millie, 9, began having seizures at four months old

“There’s no feeling any lower than when you realise that what we’ve put Millie through hasn’t actually worked. You start doubting yourself as to whether you’ve made the correct choices.”

He adds: “Now we’re seven years down the line and we’ve tried almost everything that the NHS can offer. Her doctors have told us there is nothing more they can give her.”

After 27 different anticonvulsant medicines and other treatments such as the Keto diet, Millie was prescribed Epidiolex two years ago.

The cannabis-derived medicine, which contains CBD, is available on the NHS for the treatment of seizures associated with Lennox-Gastaut and Dravet syndrome.

“It helped for a little bit, but like all the medication we have tried, it works for so long and it’s as if Millie becomes immune to it, says Steven.

“You start to see the telltale signs of the seizures coming back.”

Things began to get progressively worse last year and at Christmas she was taken off the Epidiolex as it was no longer working.

“October was the last time she was able to walk,” continues Steven.

“Over a matter of four weeks, she went from being able to run and jump, to being completely wheelchair bound and back up to having 180 seizures a day.”

Now Millie only has two options left. 

Another brain surgery, which has only a 50/50 chance of working and may result in her losing part of her vision, the use of her right arm, or never being able to walk again – or cannabis oil which she is currently unable to access through the NHS.

“We never thought Millie would get to this stage, we always thought we would find a medication that worked for her,” admits Steven.

Millie was wheelchair bound last year but has made improvements since using cannabis medicines

“You read about how cannabis has helped so many kids in the news. We decided that we couldn’t put her through the surgery knowing that there is another type of cannabis oil out there.”

But her doctors weren’t willing to talk about it and couldn’t offer the family any information about how to look into it.

It was only through a friend of a friend, who happened to know another parent whose child had the same condition, that Steven found out about the private clinics which offer this treatment in the UK.

“Doctors in the NHS don’t want to talk about it, when I asked them about the oil with THC in it I was just told no,” he says.

“Some consultants are concerned about the effect it has on the development of the brain in later life. 

“Millie was wheelchair bound, she couldn’t even sit up to eat, we had to take her to the toilet, wash her, what kind of life was she having? I would rather she have the childhood that she’s never had than worry about possible problems down the line.”

Private prescriptions of medical cannabis but patients with severe epilepsy can cost up to £2,000 a month, leaving many families financially crippled.

Steven and Marelle have managed to raise almost £20,000 through a Go Fund Me page to help cover the costs of Millie’s prescription.

She started taking full-extract oil in May this year and is slowly building up to a therapeutic dose. 

Despite suffering a setback after the oil interacted with one of her prescription medications, Millie is making progress, Steven says, with her school noticing improvements in her speech and her willingness to engage with other children and adults.

He is hopeful that it will allow her to have some quality of life in the future.

“We’ve always got hope, if you didn’t have hope you’d have nothing else,” he says.

Her parents are hopeful medical cannabis will give her a better quality of life

“We know Millie is never going to have a normal life, but we can try to make it as normal as possible for her. I’d just like to see Millie be able to support herself and as she gets older.”

He adds: “In an ideal world we’d love her to be seizure free. We know that that is a big ask and might never happen but we can at least hope to get her seizures better controlled.”

But the family is keenly aware that they can’t rely on fundraising forever, and the financial burden of funding the full prescription each month would be “unmanageable”.

The couple have even discussed the prospect of moving out of their family home. 

“We never thought we would reach the amount of money that we did and we have been overwhelmed by everyone’s generosity. Without them there’s a good chance Millie wouldn’t have been able to get this far on the oil,” he says.

“If it was the case that we couldn’t continuing fundraising then would move in with my parents. It would be a struggle.”

Millie and dozens of other patients like her in the UK, need this medicine to be accessible through the NHS. 

Just three prescriptions are thought to have been issued by the service since the law changed in November 2018.

In March this year NICE issued a clarification to its 2019 guidelines on cannabis-based medicinal products for severe treatment-resistant epilepsy, making it clear that clinicians can prescribe in appropriate cases.

But these medicines are currently unlicensed due to a “lack of evidence”.

The lobby group End Our Pain is calling for the UK Government to help fund these families’ prescriptions until they become available, with more than 100 MPs writing to the Prime Minister – a letter which remains unanswered. 

Steven has also written to Scottish First Minister Nicola Sturgeon asking for her support, but is yet to receive a response. 

“Three kids already have this on the NHS, their need isn’t any greater than Millie’s and Millie’s isn’t any greater than theirs – what’s good for one should be good for all,” he added

“It is hard for Millie and it’s hard for us. There are times when her mum and I find it hard to cope, but you need to have hope. All you can do is pick yourself back up and find that little bit more fight.”

A spokesperson for the Scottish Government told Cannabis Health: “We have enormous sympathy for Millie Gillan and her family, and we appreciate the very difficult situation any family will face in these circumstances.

“It is important to note that the regulation, licensing and supply of medicines remain reserved to the UK Government – this includes the scheduling of Cannabis Based Products for Medicinal Use (CBPMs). Under the current rules, only specialist doctors on the GMC specialist register can prescribe cannabis-based products where there is clear published evidence of benefit.

“The decision on whether to prescribe a medicine for a patient is entirely one for the clinician – whether private or NHS – in charge of a patient’s care to make, having taken into account the patient’s clinical condition and the safety of the patient.

“While CBPMs can be prescribed on the NHS, many clinicians have concerns around the safety and efficacy of CBPMs, and the lack of robust evidence on their use, particularly the long-term side effects in the developing brain.

“It is only by building this evidence base that clinicians and health boards will gain the confidence to support the prescribing of unlicensed CBPMs. With that in mind, we continue to engage with the National Institute for Health Research (NIHR) on clinical trials which will help to build this evidence base for CBPMs.”

Donate to Millie’s Go Fund Me page here