Louis has severe drug-resistant epilepsy
- He is seizure-free on medical cannabis
- His neurologist said there is no alternative treatment to keep him seizure free
- They said withdrawing his medical cannabis would risk brain damage or death
Just before his thirteenth birthday in 2016 Louis started having seizures and as time passed they got worse, no matter what medication was tried, and eventually doctors at Great Ormond Street told me his epilepsy was very complex and they didn't know what they could do to control his seizures. They told me he would never be seizure free and I should grieve for the child he once was.
But today Louis has been seizure free for over four years. This is only possible because we were able to access cannabis-based medication overseas, a natural oil that was specially developed to treat drug-resistant epilepsy.
Yet having won the fight against his seizures, Louis now has another battle to face; raising thousands of pounds to keep funding his medication because the NHS won’t give him the free prescription to which he is entitled, even though his neurologist stated that it would unethical to withdraw his medication.
Louis is clinically exceptional and the evidence that he needs this medication is overwhelming. Because of his genetic variants there are no other treatments which can keep him well and seizure free. All the other drugs he was prescribed caused continuous epileptic activity stopping him from processing new memories and exacerbating his seizures.
Medical cannabis is available on prescription in the UK but only to those who can afford it. Louis’ medication costs us £17,500 per year.
We are still hoping for an NHS prescription. Last time we tried to withdraw his medication he started seizing all night every night and needed emergency hospital treatment. If he were to suffer seizures again he would need frequent ambulances and emergency hospital admissions and this would cost the NHS over £100,000 per year. We are saving the NHS money by paying privately for Louis’ medication. But without the help of charitable donations we cannot afford to keep him well.
For the last six years we've relied on the extraordinary generosity of many friends and strangers to help us pay for Louis' medication. This support is the reason Louis is well. I'm sorry that we have to ask for help again. I find it impossible to understand why Louis cannot be given an NHS prescription.
We cannot thank everyone enough for their help and support. Louis is twenty-one now and has his life back, in spite of everything we had been told, and he is studying a Fine Art degree course and we just want his good health to continue.