In 2012 Mia Mia resident Tara O’Connell, 9, was given two years to live but her mother says medical marijuana has reduced as many as 200 siezures a day to none.BRONWYN BEYERS June 26, 2014 3:10am
Mia Mia resident Tara O’Connell, 9, would not be alive today if it was not for medical marijuana, her mother says.
When Tara was six weeks old she had her first seizure and was diagnosed with Dravet syndrome.
Her mother Cheri O’Connell said the syndrome was a ‘‘catastrophic form of epilepsy’’.
‘‘She was having 65 to 200 seizures per day,’’ Mrs O’Connell said.
Tara was on 18 different medications when she was told by doctors in 2012 she would have one or two years to live.
Following research into medical marijuana, Mrs O’Connell sought a medical marijuana supplier in NSW.
Since Tara started taking the tincture, she had been seizure-free for 14 months and was no longer taking other medications.
Mrs O’Connell said the tincture did not contain the THC compound that gave users the ‘‘high’’ feeling and was administered as a drop under the tongue.
Tara had been barely talking, but now could run and play with her peers.
‘‘She can do all the things we never imagined she would do,’’ Mrs O’Connell said.
‘‘She could not even recognise her own name.
‘‘Now she can read 80 out of 100 words.
‘‘She is able to participate in society.’’
Mrs O’Connell said Tara was her supplier’s first paediatric patient.
She said he now helped 150 children and had an extensive waiting list.
Mrs O’Connell said while she believed the medication she received was under the legal limit allowed, the cultivation of the drug was illegal.
She said her supplier was once jailed and feared it could happen again.
Mrs O’Connell would like the law to change to allow people to legally grow medical marijuana and for patients to legally access it.
‘‘There is no doubt if he is jailed, Tara would die,’’ she said.
‘‘She cannot survive without the medication.
‘‘If we skip a dose, her walking deteriorates, but we were lucky enough that she never had a seizure.’’
She said ‘‘underground people’’ would need to be called upon or she would need to grow and produce the tincture herself to continue Tara’s treatment.
‘‘You can’t test it and I don’t know if we would get it right,’’ she said.
Mrs O’Connell said the only negative side-effect to the medication was an increased appetite, but the positives were numerous.
‘‘She has increased mobility, her IQ has gone up 30 points and she does not get high,’’ Mrs O’Connell said.
She said the pharmacy drugs had negative effects on Tara’s heart, mobility, language skills and, possibly, her IQ.
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