Vera Twomey believes her daughter could have died earlier this month if she had not started taking a cannabis-based treatment.
Ava, aged 6, from Aghabullogue, Co Cork, suffers from an extremely rare form of epilepsy called Dravet syndrome.
Vera began giving Ava cannabidiol (CBD) oil at the start of October to treat her seizures and found she had just seven over the month — a reduction of between 80% and 90%.
Vera said giving Ava CBD had probably saved her life earlier this month when she had had a particularly violent seizure.
“I believe that, if we had not had the break we had in October when Ava had just seven seizures, we would have been in real danger of losing our daughter,” Vera told an Oireachtas committee on health yesterday.
Vera said the CBD helped Ava to fight off the seizure so she could still be with her family.
Before the treatment, Ava could suffer up to 20 seizures a day. She has been on 11 types of medication, but none treated the seizures successfully.
“Some of them were successful for a short period of time but the nature of Dravet syndrome is that it breaks through the medication and the seizures begin again,” said Vera.
About a year ago, when it became clear that none of the treatments were working, Vera began finding out more about medicinal cannabis.
At the end of September, Ava had 24 seizures in 36 hours so Vera decided to give her cannabis oil and soon noticed a difference.
At yesterday’s meeting of the Joint and Select Committee on Health, Vera showed members of the committee a photo of Ava after she had had about a dozen seizures.
“You can see quite vividly she is in a considerable amount of pain and it is very frightening,” she said. “When she has those many seizures we don’t know what the outcome could be.”
At one stage Ava lost her ability to walk, and it took her parents two years to get her back on her feet again.
Vera also showed the committee a photo of her daughter smiling and looking well.
“That is how we love to think of her rather than when she is having seizures,” she said.
Vera said that, since Ava has been taking CBD, she had become more like a normal child but they were keen to get help from doctors.
“I have seen in my own home that it is working,” said Vera. “We would rather be in a position where a doctor could prescribe this product for Ava so they could work with us.”
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