- Isabella Camacho, nine, has daily seizures which can last 45 minutes due to her Dravet syndrome
- Her mum, Deborah is giving her cannabis oil as part of a pilot study
- Debora said the drug has led to enormous improvements in her condition
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Brisbane mother Deborah Camacho has joined the fight to legalise medicinal marijuana in a bid to find an alternative treatment for her nine-year-old daughter whose life is plagued by seizures.
Isabella Camacho, 9, has suffered from Dravet syndrome, a severe form of epilepsy with no cure, since she was 10 months old.
The condition means she has a 20 per cent chance of dying before her 18th birthday from a condition which had left her with behavioural problems such as speech delay and movement and balance issues. But the most significant impact on her life is her daily seizures which can last up to 45 minutes.
Since feeding Isabella two milligrams of cannabis a day, the Brisbane mother says her daughter’s life has been turned around and her seizures have drastically improved.
Deborah Camacho (left) has been giving her daughter Isabella Camacho (right) cannabis oil in an attempt to treat her life-threatening seizures
‘She was rashing up, blue in the face, unconscious, eyes trolled back, foaming at the moth – it was absolutely horrific,’ Deborah told the Daily Mail Australia of her eldest daughter’s first seizure when she was just 10 months old.
The mother-of-four says she now suffers from post traumatic stress disorder and anxiety from having to deal with her daughter’s daily seizures.
Ms Camacho said she constantly lived in fear that each seizure could be the last.
She said her two sons and second daughter also suffer from anxiety worrying about the health of their sister.
‘Doctors tell us that to give her the best quality of life we have to limit their seizures,’ Deborah said.
‘You have to get the paramedics out each time and all my other children are affected because they have to watch each time, and they always ask me “is Isabella going to die this time, mummy?”
‘Her seizures are started by any trigger – if she doesn’t have enough sleep, she’ll have it in the playground at school.’
Isabella, pictured here having a seizure four years ago, suffers from Dravet syndrome, a severe form of epilepsy with no cure. She has tonic clonic seizures that can last up to 45 minutes
During a seizure, Deborah said all she can do is put her daughter in the recovery position and wait for paramedics to arrive
Taking part in a variety of support groups, Deborah even placed a video of one of Isabella’s seizure online in which she can be heard trying to organise her other children for the afternoon so she could accompany Isabella to the emergency room – a standard everyday procedure for the family.
She recently placed Isabella on a non-government pilot study run by de-registered Sydney doctor Andrew Katelaris, which is testing the effectiveness of CBD cannabis in treating children with severe epilepsy.
Since feeding her daughter two milligrams of marijuana oil each day, Deborah says she has seen an enormous improvements. Isabella’s extreme 45 minute seizures were reduced from three a week to just one every month.
‘She was becoming much more awake – it’s like her brian is waking up, it’s amazing,’ she said.
‘She has been able to endure all day whereas I’d be rushing to school to pick her up each day when she has a seizure.
The mother-of-four said her eldest daughter’s mental and physical health has greatly improved since she began the marijuana study: ‘she’s more alert more aware and more happy now’
The non-official pilot study is being run by de-registered Sydney doctor Andrew Katelaris. He is striving to make CBD dominant cannabis, which he says does not have an intoxicating effect on users like THC dominant cannabis, approved for medical research
‘Her speech is improving, she’s even able to sing songs now – she’s sounding like a teenager actually, singing all these love songs!
‘Her appetite has improved greatly, she’s more alert more aware and more happy now. She was always crying on this other medication, like real tears too like she had depression, and now she’s just happy.’
Dr Katelaris, who supplies the marijuana, told the Daily Mail Australia that the cannabis used to treat the seizures did not contain the THC chemical that intoxicated users and made them ‘high’. Instead, the strain contained the non-intoxicating CBD chemical, he said.
‘They’re both cabanoids but THC is considered the intoxicating version while CBD has anti-inflammatory effects – that’s why its so useful in brain disorders and it has been proven to reduce dementia in dementia suffering animals at Sydney University,’ he said.
Dr Andrew Katelaris said his pilot study was inspired by the medical marijuana movement which is taking off in certain states in the US
Despite receiving enormous amounts of criticism for her stance, Deborah (left) refuses to back down from her goal to make medical marijuana available as an alternate treatment in hospital settings
Deborah said she decided to take part in the study after growing tired of constantly trying various medications which had bad side effects such as one which shrinks her daughter’s gums.
‘One of them is called Frisium which is going to be hell getting her off. It has like withdrawal symptoms that crack addicts go through – I’m highly against drugs,’ the Brisbane mother said.
‘I just think I’d rather have plant-based medicine for my baby instead of all this crap she’s been given over the years that’s wrecking her body.’
Despite receiving enormous amounts of criticism for her stance, Deborah refuses to back down from her goal to make medical marijuana available as an alternate treatment in hospital settings.
‘A lot of mums are too scared because it’s currently illegal, but when you actually stop, read and educate yourself its actually something that’s going to help these kids and it is a disgrace that it isn’t offered – there’s people’s lives at risk,’ Deborah said.
Dr Katelaris, whose study was triggered by a recent break through in the United States, is also struggling to be given a chance to present his controversial findings.
I want CBD dominant cannabis moved out of the prohibition schedule and approved for medical use because CBD is not only not intoxicating but annihilates the toxic effects of THC,’ he said.
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