Just this past week 17-year-old Tina McElligott from Kilflynn, Co.Kerry, passed away from rare disease complications, reported Irish Mirror. She had suffered her entire life with Alpers syndrome, having consistent and intense seizures, yet this past Friday would have a finite, devastating outcome. While it is a sad time for the McElligott family, Tina was the longest living person diagnosed with the disease. She outlived her cousin, who was previously the longest lived.
Alpers syndrome is a fatal rare neurological disease that onsets seizures and can be intensified by liver disease. Many patients with the disease face exaggerated reflexes and a slow decrease of cognition. There are no cures for the disease and very limited treatments. Yet, the McElligott’s found out about the positive effects of medicinal cannabis oil therapies and have fought hard to see its legalization.
Patricia, Tina’s mother, saw significant improvement in Tina due to this therapy. Afterwards, Tina went 8-months free without have any seizures, the longest she had gone in a very long time. They had to go to Spain to undergo the treatment, but now Patricia wants to make it accessible in other places as the results are great.
While they found short spurts of success from the treatment, Tina would eventually lose her battle to the disease. Her mother announced the news on social media highlighting that she went away peacefully, without pain, and while it’s incredibly heartbreaking, they will see her again. No day ahead will be the same, but Tina will forever remain in their hearts.
A campaigner for the legalization of medicinal cannabis, Kristofer Shekleton, never had the chance to meet Tina, but did connect with Patricia and feels so blessed that she did. She promises to continue the fight to make the treatment more accessible, so that patients suffering like Tina did can live longer, happier lives.
