'It's the last thing we can try; we want as much time as possible with Tina'

Margaret McElligott from Kilflynn pictured at home with her 16-year-old daughter, Tina, who suffers from the rare genetic condition Alpers Syndrome. Photo by Domnick Walsh
Margaret McElligott from Kilflynn pictured at home with her 16-year-old daughter, Tina, who suffers from the rare genetic condition Alpers Syndrome. Photo by Domnick Walsh

Fergus Dennehy

A Kilflynn mother whose 16-year-old daughter is fighting for her life after being diagnosed last year with the incurable Alpers disease is facing one of the biggest fights of her life as she tries to secure the use of medical cannabis to help ease her daughter's symptoms and prolong her life.

Margaret 'Mags' McElligott has taken to the media and to the online world this week as she tries to raise both vital funds that are needed to fund a trip to either Colorado in the US or to mainland Europe, where her daughter Tina can legally receive the vital treatment she needs to help stop the violent seizures that have affected her for the last decade.

It has been a hellish time for Mags after Tina was diagnosed with Alpers - a disease characterized by lack of coordination of motor movement, partial paralysis, seizures, and muscle spasms - back in March of 2016 and now with her options running out, Mags is appealing for help.

"Tina was two and a half when this all started. She fell into a coma for a week back then and it's been ongoing from there; we've been up and down to Temple Street in Dublin for years to try and find help," Mags told The Kerryman on Tuesday.

At 16, Tina is currently believed to be the world's oldest sufferer of the disease, which claimed the life of her 12 year old cousin Sarah a number of years ago. Alpers has left Tina wheelchair bound and in severe pain for the past number of years.

"The medical cannabis that we need is not legal here in Ireland but even if we got a special deal from a Minister and a specialist, there is no-one trained in Ireland to help administer the drugs to her in the proper way, so that is another reason we will have to travel abroad," Mags explained.

"We're not just hoping to go to Colorado, we are just hoping to go somewhere where a form of treatment is available; I'm going back to Dublin soon and I'm going to ask Tina's consultant Professor Keane to advise me if there is somewhere in Europe rather than Colorado that we can go to."

"If we could get the medical cannabis for her, we think that this would definitely stop the seizures and if we can stop the seizures, we might get another year or more to spend with her. It's all about getting to spend as much time with Tina as possible," Mags said, her voice breaking with the emotional strain of Tina's plight.

"I know what I'm looking for is a miracle and I know that specialists have said they don't think that medical cannabis will do anything to help, but they can't be sure and because of that, I can not and will not stop trying to secure it for her; this is the last thing medically that we have to try."

Mag's latest appeal for the introduction of medical cannabis comes as Cork mother Vera Twomey resumes her gruelling 260km walk from Cork to Leinster House in Dublin to highlight her daughter's urgent need for the drug - also to alleviate regular seizures she suffers.

"I can't go out and do what that wonderful mother in Cork is doing for her daughter by trying to walk to Dublin as I have to be here with Tina all the time but I will try to do everything I can to get her the help that she needs," said Mags.

Anyone looking to donate to Tina's fund can do so at: www.tinamcelligot.com