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Updated: 20.45
DETERMINED MOTHER VERA Twomey will approach the outskirts of Dublin this evening as she continues her trek from Cork for her sick daughter Ava.
She began the 260km walk from her home to the Dáil last Monday as a protest against decisions to restrict her seven-year-old daughter, who has a rare form of epilepsy, from accessing cannabis-based medication.
TheJournal.ie joined Vera and her supporters, including TD Gino Kenny, on Facebook Live as they made their way through Newbridge in Co Kildare this afternoon.
She’s been battling injury, illness and dreadful weather in the last few days – but told us the support from people in towns and villages along the way had been phenomenal.
As we talked, there was another boost for Vera’s spirits – as a marching band from Patrician Primary School in Newbridge came out for form a guard of honour for her.
“I’m just so grateful that people care around the country,” an overwhelmed Vera said as the pupils finished playing.
We’ll make them change above in Dublin because people, the real people of Ireland, care.
Vera began suffering from tonsillitis in recent days – but remains determined to keep talking to as many people who are listening, as she fights for her daughter. Local radio stations and newspapers have been covering the journey as she makes her way across country on secondary roads.
She had straps placed on both legs at the end of last week as the journey took its toll on her body – and by yesterday was making her way along on crutches. By this morning, the only option left was a wheelchair.
Health Minister Simon Harris released a statement this evening and said he is available to meet with Vera when she arrives into Dublin tomorrow. He said that the HSE advised him that her consultant will be in touch to arrange a further consultation for her daughter.
He added: “I also shared with her a statement by Dr Tony Holohan, the Department’s Chief Medical Officer, on the advice he has provided to me which stresses that the granting of a licence must come with the endorsement of a consultant who is familiar with and responsible for the care of the individual on whose behalf the application is being made.”
Harris added that it is not within his power “to provide medicinal cannabis tomorrow”. He said he remains fully committed to “establishing an access programme for cannabis-based treatments in Ireland”.
Gino Kenny, who has been campaigning to increase access to medicinal cannabis, called on supporters to join Vera on the route tomorrow. They would be starting at Rathcoole at around 8.30am, the AAA-PBP TD said. After welcoming more wellwishers at Newland’s Cross at 10am, they plan to walk to the Dáil via Inchicore, arriving around lunchtime.
The Dublin TD has been walking the entire route, and said support had been incredible. Asked if he expected progress as Vera arrived in Dublin tomorrow he said he wasn’t too hopeful, and accused the Government of playing “mind games” on the issue.
Seven-year-old Ava has Dravet Syndrome, an extremely rare, drug-resistant form of epilepsy which at its worst can cause up to 20 seizures in a day.
Vera says that medicinal marijuana in liquid form has the potential to save her daughter’s life, as it reduces the frequency of seizures.
Before Christmas – having been frustrated by continuous efforts to contact the Department of Health, and after her daughter had a particularly violent seizure – Vera set off on a Cork-Dublin protest walk to try and get the government’s attention.
On that occasion she only had to trek as far as Mallow before she got a call from Health Minister Simon Harris. A meeting was arranged, and the Minister announced a review of Ireland’s policy on medicinal cannabis.
The Health Products Regulatory Authority last month recommended that access to such products should be allowed for certain conditions. Another meeting with the Minister took place, but Vera said she had been told her application for stronger drugs had been turned down as she and Ava need sign-off from a consultant neurologist to apply.
Ava has been on a CBD-based treatment since last October, and has shown a marked improvement, according to Vera. This product contains very little THC — the active substance in cannabis which results in a high.
The Cork woman is now campaigning for access to stronger THC-based medication. She says paediatric neurologists who have been working with the family are reluctant to apply on her behalf – but says this underlines why the law needs to be changed.
She called on the government to speed up progress on Kenny’s bill to legalise medicinal cannabis.
Kenny. meanwhile, accused the government of stifling the bill.
In Vera’s case the compassionate access licence has been turned down – and the primary reason why I’ve been walking with Vera is to get access for Ava for medicinal cannabis.
“But it goes much beyond that,” he said. There are “many, many people” who could benefit from access to medicinal cannabis, the TD insisted. “The law needs to be changed.”
Last month, Twomey released a harrowing video of Ava suffering a seizure to TV3. Speaking in a later radio interview, she said that despite the coverage Ava’s case had received in recent months, very little had been done to change the situation she was in.
When Twomey and her husband, Paul, released the video to TV3, they said they had reached their “last straw” and felt like they badly needed something to be done. She said Harris had acknowledged he’d watched it in their most recent meeting, saying it was “difficult to watch”.
The Department of Health issued a statement after Harris’s latest meeting with Vera where he reaffirmed what he said when the HPRA review was released, namely that a pilot access programme for cannabis-based treatments would be rolled out for patients with specific conditions, including severe epilepsy.
The statement added that, “until such time as the necessary legislative amendments has been made to facilitate the implementation of the Cannabis Access Programme, it remains open to the Minister to consider granting a licence to an Irish registered doctor for access to medicinal cannabis for named patients”.
Video by Nicky Ryan
With reporting by Garreth MacNamee
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