A Scots mum is fighting for her two-year-old daughter to receive cannabis-based drugs she believes “could potentially save” the tot from terrifying seizures.
Hannah Granger, 31, says her daughter Minnie was at one point suffering over 100 seizures a day before being prescribed cannabidiol (CBD).
The Cardonald mum said Minnie is not having as many seizures at the moment, but is still experiencing the most debilitating ones, which can leave the toddler unable to breathe for almost a minute.
Her mum believes medication containing THC — the psychoactive compound in cannabis — could improve Minnie’s quality of life and help reduce the frequency of her seizures.
Medicinal cannabis was legalised in the UK in 2018, but the NHS believes the risks associated with medications containing THC “are not currently clear”, and that clinical trials are needed before they are used.
Doctors discovered Minnie was missing 21 genes, many relating to epilepsy, when she was just eight weeks old.
The rare condition has left Minnie experiencing six different types of seizures. The tot sleeps around 19 hours a day, is heavily medicated and cries when she is awake.
She most suffers a seizure that stops her breathing for up to 50 seconds multiple times each week, and each time Hannah has to stimulate Minnie’s chest to get her breathing again, place her on two litres of oxygen, record the seizure and time it.
Hannah describes caring for Minnie as a 24/7 job, husband Gavin and big brother Finley, 12, also helping to care for Minnie.
Hannah said: “Minnie’s seizures are so bad that she cannot be left alone. If I go to the toilet, she comes with me, when I’m doing washing, she’s with me. These breath-holding seizures are so horrendous. I have seen her saturations completely flatline.”
Minnie has been placed on nine different anti-seizure medications, but her mum says doctors believe she is resistant to the drugs, meaning the chances of any anti-seizure medication controlling her epilepsy are very slim. The family has been told Minnie will never be seizure free and will likely only survive into early adulthood.
Hannah said: “This is a drug that could potentially save Minnie. She’s supposed to be starting nursery and doing all these things, but she’s just sleeping full time.”
The NHS is currently providing Minnie with Epidyolex, a CBD oil derived from cannabis that does not contain the THC. Hannah believes a medication containing THC would keep Minnie’s seizures at bay for much longer.
Hannah said: “Before she started Epidyolex, Minnie was having over a hundred seizures a day. She was having tonic seizures where her arms would be stiff, she was having clusters of seizures all day long, spasms, absent seizures. She started the CBD and the tonic seizures and spasms, they completely stopped. The CBD has done something for her seizures, but it’s not enough to take away the big ones.”
The mum says she has been unable to obtain a private script for the higher THC medication. She says other parents have been forced to go to Holland to obtain the medication.
She said: “You’re being put in a position of having to be a criminal to save your child’s life. I know getting Minnie cannabis oil isn’t going to cure her—it’s not going to change the fact that she’ll die in early adulthood—but it’s going to make that time on our side a lot easier if she’s not having intractable epilepsy every single day.”
Hannah has said she believes it could take years for the drugs to be approved by the NHS and made available to children. She said: “Minnie hasn’t got years to wait. She could be dead by then. She has such bad side effects to anti-seizure medications that putting her on a new anti-seizure medication could kill her.”
Minnie is also currently being treated with potassium bromide, which remains unlicensed in the UK, and is used when all other treatment options have been unsuccessful. Hannah said: “If they can put her on potassium bromide, which is unlicensed, why not cannabis oil with THC that is also unlicensed.”
The mum has been encouraged by videos on social media she says show incredible improvements in children following treatment with cannabis oil containing THC. But the NHS says the risks associated with medications containing THC “are not currently clear,” listing potential risks as psychosis and dependency.
She maintains that these risks are outweighed by the potential benefits the drugs could have to Minnie’s quality of life. Hannah believes the cannabis oil would make Minnie more aware and reduce the frequency of her seizures, adding: “This medication is sat there, ready to go, and they’re not letting us have it.”
Two nationwide trials of cannabis-derived drugs are to get underway this year, according to charity Epilepsy Action. Hannah is hoping to get Minnie early access to the medication ahead of the trials.
Hannah said: “Minnie can’t wait for access to the trials in September, and this is a viable route. Why not give it to her now before it’s too late?”
Hannah praised UK-based campaign group End Our Pain which campaigns for the legalisation of cannabis-based medications for children and is supporting the family.
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