Mum pleads for help to send her daughter for cannabis treatment

The chance of medicinal cannabis being introduced in Ireland anytime soon is about as likely as winning the Lotto, a distraught mother has claimed.

Tina McElligott from Tralee, who has Alpers disease, with her mum Mags.

Teenager Tina McElligott from Co Kerry is the longest-living person in the world with a rare illness and is constantly at risk of death due to seizures.

Her mother, Mags, said time is running out in her daughter’s battle to stay alive as she suffers from Alpers disease, which causes dozens of violent seizures daily, along with chronic pain.

The condition of Tina, 16, from Kilflynn near Tralee, has taken “a turn for the worst” over the past few days, with the teenager experiencing severe pain.

Tina’s family is faced with leaving home so that she can be treated with medicinal cannabis, her mother said.

“We are now, more urgently than ever, pleading for the assistance of the Government and the Irish people to send Tina to Spain for treatment,” says Mags.

“Sending her to the US is beyond our scope as we need €350,000 to allow her to be treated there.

“Tina had a terrifying seizure lasting almost 20 minutes last week. She has four or more seizures a day, but this one was one of the worst.

“At the minute, we are trying to get the public to realise that Ireland has about as much chance of getting cannabis treatment as we have of winning the Lotto. The odds are about the same.

“Our fundraising efforts online have stopped for several reasons, the main one being the people of Ireland seem to think, based on the news, that Ireland will be legalising the use of cannabis therapies in the near future.

“However, we know from talking to TDs such therapies are a long way off, and time is not something Tina has.”

A Health Products Regulatory Authority report, published in February, advised that a policy decision should be taken to permit cannabis under an access programme.

However, for Mags, the constant pain and seizures her daughter experiences are heart-wrenching and soul-destroying.

“She screams with pain so badly I cry with her,” she says. “I can feel her pain and I feel no-one could or can do anything for her. It really makes me feel like a bad mother as if I’ve failed her.

“Every seizure takes a little bit of Tina, so her need to get to treatment is more urgent now than ever.

“Tina’s not great, but you know that when people see the cancer sign they take notice; what they don’t really know is that epilepsy is also a killer.

“It only takes one seizure, but if seizures can be stopped, it gives a person a longer life. I can’t stress this enough as people regard it as, ‘Oh it’s only seizures’ but they’re so wrong. I feel so alone at times and I still think what Tina is enduring can’t be happening.

“Tina doesn’t know what is happening to her as she is special needs but she does understand everything.

“As a family, we don’t know if we’ll tell her how ill she is. It seems so cruel in one hand and not fair on the other. I’m scared if we tell her it will make her freak out but her palliative care nurse told me she may take it better than us.”

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