****UPDATE 17/11/2022

Thanks so much to everyone who has donated. Because of these donations Louis has now been seizure-free for over two years.

Louis' Bedrolite, the cannabis medication he needs to control his seizures costs £1,426 per month. If we can each £20,000 that gives us enough funds for Louis’ medication for the next 4 months.

We have raised our target to £30,000 in the hope that we can raise enough money for Bedrolite until this time next year.

Stress is one of the worst triggers for seizures and life would be so much easier for Louis knowing that he has enough funds to pay for medication at least for another year. Louis says: 'I want to paint for a career and am totally dedicated to that. I want to enjoy life and focus on my goals without constantly worrying about whether I’ll be thrown back into a part of my life I’ve left behind and certainly don’t want to return to.'

In March Louis’ neurologist said withdrawing his Bedrolite would risk death from seizure related injury or status epilepticus. But NHS England refused to fund it.

Louis' epilepsy is very severe and complex and there are no alternative treatments.

Suddenly in November, completely out of the blue and with no warning, his neurologist decided to discharge him from her care, they wrote:

'I am writing to inform you and your family that I have taken the decision to hand your care back to your GP. I have taken this step, as I feel our outpatient interaction under my care has acquired one focus only for you and your family: that of requiring me to prescribe Bedrolite, an unlicensed drug, which for reasons I have extensively outlined in person and in writing, I am unfortunately unable to do.’

Our ‘one focus’ has and is only to keep Louis seizure-free. We thought that was what his neurologist wanted too. We are left perplexed and confused.

We are now putting all our energies into finding alternative funding. If anyone has any ideas of charitable trusts that might help us please let us know.

A Brief Euphoria by Louis Petit

****UPDATE 03/11/2022

Louis has now been seizure-free for two years. It’s still hard to believe he is so well. In 2016 his doctors said I should grieve for the child he once was. In 2018 Great Ormond Street told me his epilepsy was so complex they didn’t know what more they could do for him.

As a last resort we went to the Netherlands to try medical cannabis. At that time Louis was suffering epileptic activity every few minutes and regular violent convulsive seizures, some so violent it looked like his face was about to explode. Medical cannabis seemed to help but the seizures continued.

We now know the anti-epileptic medication he was on actually caused seizures. These drugs are highly addictive and harder to withdraw than heroin. They took two years to wean and Louis nearly died coming off them.

They said we would never know the cause of Louis’ epilepsy and he would never be seizure-free.

Yet here we are four years later, home with Louis at art school studying a fine art degree. Not only is he seizure-free, we also know the cause of his epilepsy — an extremely rare genetic variant which explains why all the drugs he was tried on made him so violently ill and stopped him processing new memories. He says being clean of them was like waking from a four-year coma.

NHS prescriptions for cannabis medication are rarer than hen’s teeth, but Louis’ neurologist and hospital trust wholeheartedly supported an application, based on the complexity of his case, his exceptional recovery and the stated belief that any change of medication would be unethical because it could, as before, endanger Louis’ life.

We were cautiously optimistic, only to be informed that the case was never reviewed, following a recent NHS decision no longer to fund unlicensed cannabidiols, so recent that it was news to the hospital. The NHS said the hospital could fund it. But the hospital won’t as it would set a precedent. So many other patients could benefit from medical cannabis, which the hospital says it can’t afford. But Louis’ case is so evidently rare that no precedent would be set.

Even more shocking, and out of the blue, Louis’ neurologist suddenly withdrew support for prescribing, citing concerns about ‘unknown side effects’, with no evidence for what those might be.

But we have also been told there is no chance that a trial of any significance could be carried out on Louis’ disorder given such a rarity. Furthermore, when there is such a profound benefit in any individual there is no need for a trial of treatment because ‘Louis is his own trial’.

Louis has been on this medication for four years without suffering any side effects. Two other children in the UK have NHS prescriptions for the medication Louis is taking. They have been on it for four years too, again without any negative side effects.

There is no alternate treatment which will control his seizures. His NHS neurologist said Louis can continue to live a happy healthy seizure-free life as long as we carry on paying for his medication.

Denying Louis an NHS prescription doesn’t make any sense. Not clinically, financially or morally. We are still in a state of shock and disbelief.

On a more positive note, Dr Michael Gross, Consultant Neurologist, writes, ‘I found it inexorable that there could be any decision that has denied Louis this treatment after so much energy has gone into finding a treatment programme that has generated such benefit. In a way Louis should be regarded as a pioneer -- someone who has climbed Everest, travelled to the North Pole, or gone to the deepest depths of the ocean in finding a treatment that has been so effective and may benefit others into the future but let it be sufficient that it is giving him at this moment a normal life.’

Today we celebrate.

Two years of seizure-freedom.

This is thanks to all of our friends and family and strangers who have generously donated to this Justgiving Fund. Without your support we would never have reached this major milestone.

I’m looking for charities which might help fund Louis’ medication. Just so he can at least finish his degree course. We have spent most of the money raised already. We have enough to pay for another month of medication. Any more help will be welcome but we understand it’s very hard during a cost of living crisis to ask for donations. If anyone has any ideas about anyone we can approach who will consider supporting Louis through art school we will be very grateful.

The Demons From Paradise by Louis Petit

This piece is about seeing a different side of someone and liking what you see. It’s also about the loss of that person you thought you knew — leaving someone isn’t easy because losing someone isn’t instant, you will lose them over and over again until you're done with it and you learn to live without them in your life. If you decide to love someone let that love me mutual otherwise be selfish and only share as much time as you are comfortable sharing, don’t sacrifice your own peace for the happiness of others. Nostalgia is a liar emitting our best memories but the truth is not everybody is worth your time and not every experience is meant to last forever.

****UPDATE 08/10/2022

Despite next month being the second anniversary of Louis being seizure-free - a cause for huge celebration - life remains highly stressful and uncertain because of medical and political chaos. We have spent 11 frustrating months failing to get Louis a NHS prescription for his medical cannabis, which we otherwise can’t afford.

We were hopeful of succeeding 1) because of the extreme rarity of Louis’ genetic condition and 2) we were told it would be 'unethical' to change anything.

Instead we found ourselves in an incomprehensible world of bureaucratic indecision, contradiction, intimidation and lies, paranoia, false economy and about turns. Because of the current political mess scheduled meetings with parliamentary health secretaries have been cancelled and Louis’ case has remained unaddressed for nearly a year by the lame ducks of government and the NHS. Louis’ doctor's submission for a prescription was rejected out of hand without even being considered by a board of experts.

Louis is on Bedrolite. Bedrolite is a legal medical cannabis. Everyone agreed that he more than qualifies for a prescription, which, according to guidelines, is available on medical discretion. But we have since been told they will not prescribe Bedrolite on the NHS. At the same time they are telling us it would be unethical to change anything.

The choice is stark: I am in effect being told that if we want Louis to continue living a seizure-free, independent life I have to pay for his medication myself.

The medication costs nearly £50 a day, and around £17,500 a year.

We have only enough funds to pay for another month’s medication. I’m sorry to ask again for help but every donation, however small makes such a big difference to Louis’ life and we will be forever grateful.

'Seeing You From a Lost Point of View' by Louis

Louis writes: It's about someone seeing another person in a way they haven't seen for a long time, like rekindled love, you are seeing them from a lost perspective and how you used to see them before your view changed and the love died. The eyes on the back represent the lost perspective that we can't see anymore and the red romantic scenery in front of him represents that the love is still right in front of you, but you just need to see it from a lost perspective.

****UPDATE 05/08/2022

Louis has now been seizure-free for 21 months, thanks to the generosity of everyone who has donated.

For years I was told he would never be seizure-free and I should grieve for the child he once was and to accept he would never be able to live an independent life.

He is now well and happy. In October he starts a Fine Art Degree Course and he can’t wait.

But the NHS are still refusing to fund Louis' medication.

His neurologist wrote: ‘It is incredibly rare that patients with such high seizure frequency and frequent episodes of status a) respond to medication and b) respond to achieve complete seizure freedom. This outcome is truly remarkable and stopping Bedrolite would pose Louis at such high risk of relapsing into refractory seizures and potentially status epilepticus, that I feel it would be unethical to stop this drug.’

Status epilepticus is a state of continual seizure that can cause brain damage and death. In 2020 Louis was in status 10 times in 10 months.

The last time he had seizures was in November 2020 when we tried to withdraw his Bedrolite and he went into status again. If emergency medication hadn't stopped him seizing he might never have regained consciousness. NHS England are willing to risk this happening again by refusing to fund his Bedrolite - a legal medication which they already prescribe for two children in the UK.

Since legalisation in 2018 there have only been three NHS prescriptions for Unlicensed Cannabidiols for patients with drug-resistant epilepsy. Louis fits all the criteria for NHS funding. But he has been refused after unlicensed Cannabidiols were suddenly removed from NHSE commissioning lists, with a block now on new prescriptions.

Bedrolite gave Louis his life back. NHS England is now threatening to take it away, unless we can somehow find a way of continuing to pay for the treatment which has manifestly worked for almost two years. Louis has suffered enough already. Please can you help us pay for his Bedrolite which costs £17,593.50 per year. Even the smallest donations help.

Many many thanks

****UPDATE 31/05/22

Again we are overwhelmed with everyone’s generosity, I can’t express how much it means to us to know that Louis has enough Bedrolite to keep him seizure-free until August. I can’t thank you all enough.

We have at last received a letter from NHS England explaining why they won’t fund Louis' Bedrolite. They say individual hospital Trusts should fund it out of their own budget but we have been told by Louis’ Trust that it is worried about setting a precedent. It all goes round in circles. The battle continues. Louis’ whole life is at stake.

****UPDATE 29/05/22

Thanks to everyone’s generosity, we now have enough money to fund Louis’ Bedrolite until the 9 July. It’s such a help knowing we are not fighting this battle alone. We live in constant anxiety, fearful of another seizure. Your kindness helps reduce that anxiety. It shows how much people care and it is a huge relief that we can now at least pay for Louis’ medication for another six weeks.

NHS England rejected his hospital Trust's request for funding for Bedrolite without even considering the medical evidence. We are asking them to listen to his neurologist. His seizures cannot be controlled with pharmaceutical drugs alone and without Bedrolite he will lose his life again to seizures.

Since being told that the NHS won’t fund his Bedrolite prescription, Louis has been having a recurring nightmare: he wakes within the dream, feeling like death, to be told by me he has had another seizure, and he cries out in pain and anger. This has happened over a thousand times in real life; thank goodness these are only dreams but he should not have to cope with this level of stress.

I was promised NHSE would write to me to explain their reasons for denying Louis the medication that keeps him well. Three weeks later, I’m still waiting, and still in a state of shock that they care so little for the welfare of my son.

Sadly we have no choice but to increase the target again while we continue to press the NHS to review their decision.

We now have a private prescription for Bedrolite. In the UK that will cost £1,422 per month. We have already spent £6000 on Bedrolite and have enough until the end of June. If we can raise £10,000 that will give us enough until 14 September. Surely that gives NHS England enough time to realise they are acting unethically and not following their own published guidelines.

Perhaps NHS England should also consider what Aneurin Bevin (Founder of the NHS) once said: 'No society can legitimately call itself civilised if a sick person is denied medical aid because of lack of means.’

Louis writes about his recent picture: 'This painting is about the many times I was put on bad epileptic medication, with terrible side effects. Little is known about my disability and when it comes to cures even less is known. Being put on drugs became a guessing game and it didn’t matter about the side effects, as long as something worked but none of these drugs stopped my seizures. The picture shows me taking a prescribed drug, or just smoking in this case, unaware of the hallucinations I will experience and the bad memories and thoughts around me. The hallucination in the centre painted a halo over his head to represent the deception of good and bad. The one medicine that works for me is cannabis, a drug that is seen as negative in the eyes of the public, but it has the least side effects and stopped my seizures completely. I was recently denied NHS funding for this drug, even though my neurologist doesn’t want to wean me off any drugs and wanted them to fund. I meet all the published guidelines required for the prescription.'

****UPDATE. 20/05/22. We have just received the devastating news from Louis’ neurologist that our funding request to NHS England for his medical cannabis has been rejected.

His neurologist and the Complex Epilepsy Team agree that it would be unethical to withdraw Louis’ Bedrolite.

But NHS England did not even consider his doctor's clinical judgment. They say they have changed their policy and will not fund any cannabis based medicines apart from Epidyolex.

Epidyolex will not help Louis. He needs to stay on Bedrolite, which is made from the whole cannabis plant not just one cannabinoid.

Unless we can find ways of paying for his Bedrolite, the NHS is in effect sending him back to hospital again suffering seizure clusters and status epilepticus.

The situation is so tragic and frustrating… The NHS England's website still says that medical cannabis can be funded in exceptional cases like Louis’ and the government claims the NHS can prescribe medical cannabis (and that the decision to do so rests with clinicians) but this is clearly not the case. Even when a clinician wants to prescribe medical cannabis, the NHS are not willing to fund it.

Despite all of this Louis remains positive and productive… his recent paintings are testament to his tenacity and creativity. With the medication, and your continued support, Louis is living a full and independent life.

We cannot thank you enough for being there.

If you are moved my Louis’ story and have a moment, we would also be very grateful if you could write to your local MPs on our behalf.

With deepest thanks,

Emma and Louis.

******

Here is Louis' story...

Louis started having seizures when he was 12. He was tried on 7 different anti-epileptic drugs but these just made his seizures worse as well as causing devastating side effects. In 2018 we came to the Netherlands to see if medical cannabis could help, and the results have been phenomenal.

In Louis' words...

But at the cost of more than £1200 per month, the only way we have been able to afford Louis’ life-changing medication is thanks to the extraordinary generosity of those of you who have donated over the last three years.

Without you, Louis would not be as well as he is now.

We are now trying to get Louis an NHS prescription for medical cannabis so we can move back home to London. However, we have been warned that this could take months so sadly we are again asking for help to fund his cannabis medication until we are able to return.

However ill Louis has been he has always continued to draw and paint. He has shown the most exceptional courage and strength of mind to deal with the pain and uncertainty of life with uncontrolled seizures. With medical cannabis Louis is now well enough to go to art school and live an independent life, something we never dreamed might happen…

It is impossible to properly express the depth of our gratitude to all those who have helped Louis so far. If you are in a position to help this time round, then we again offer our sincere thanks. And if you are moved by Louis’ story, but not able to support us with a donation, please do share this page.