Vera Twomey pleads to maintain access medicinal cannabis for Ava

Vera Twomey pleads to maintain access medicinal cannabis for Ava

A mother has pleaded with the government to ensure her daughter’s overseas medicinal cannabis supply is maintained during the Covid-19 crisis.

Vera Twomey, who spearheaded a campaign to secure medicinal cannabis for her daughter, Ava, said EU-wide travel restrictions will prevent her from travelling to the Netherlands this week to collect Ava’’s supply of meds for the next three months.

"I’m afraid that Ava’’s seizures will come back if she doesn’t get her medication and that she’ll just go into freefall," she said.

Ava has Dravet Syndrome, a rare form of epilepsy that causes multiple seizures a day.

Ms Twomey led a mammoth campaign to secure access to a form of medicinal cannabis which was unavailable in Ireland.

The family was finally granted legal access under special licence to medicinal cannabis. The treatment has transformed Ava’s life.

The Twomey's are issued with a licence every few months which allows them to import the medicine legally but they must travel to the Netherlands to collect it in person.

Ms Twomey said they were due to travel this week to replenish Ava’s medicine but the Covid-19 travel restrictions have hit their plans. 

"It is essential that her medication regime is maintained. What am I going to do when her THC runs out?" she said.

"We can’t get it posted because of legal issues on the Dutch side. But in the UK, for the last two years, they have arranged for a distribution company to collect bulk orders of the THC oil on patient’s behalf, and then ship it back to the UK where it is then distributed to pharmacies from where the families and patients can collect it."

Ms Twomey fears the progress Ava has made will be lost if she can’t access her medicine.

"A seizure could take Ava’s life at any time but we have learned is to put that to the back of our minds, thanks to the medication, but with Covid-19 we are fearful that this could take her," she said.

Ms Twomey and her family are taking steps to self isolate at their home in Cork to minimise the risk to them and particularly to Ava.

She said she has tried to raise her concerns with various politicians and with the HSE and the Department of Health but feels that their focus is currently on dealing with the crisis.

But she said they will have to focus soon on making specific arrangements for vulnerable people like Ava.

    Useful information
  • The HSE have developed an information pack on how to protect yourself and others from coronavirus. Read it here
  • Anyone with symptoms of coronavirus who has been in close contact with a confirmed case in the last 14 days should isolate themselves from other people - this means going into a different, well-ventilated room alone, with a phone; phone their GP, or emergency department;
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  • ALONE has launched a national support line and additional supports for older people who have concerns or are facing difficulties relating to the outbreak of COVID-19 (Coronavirus) in Ireland. The support line will be open seven days a week, 8am-8pm, by calling 0818 222 024

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