THE DEVASTATED family of a Kerry girl who was the world’s longest living person with the rare illness Alpers syndrome have asked mourners to wear bright colours at her funeral Mass on Wednesday.
Kerry teenager Tina McElligott, from Kilflynn, passed away on Sunday afternoon following her lifelong battle with the rare disorder. Tina died in her mother Mags and father Martin’s arms.
The 17-year-old girl will be waked at her home, in from 4 pm to 8 pm today and will be taken by horse-drawn carriage to Kilflynn Church for her funeral Mass at 11 am.
McElligott suffered life-threatening seizures as a result of Alpers syndrome and suffered a serious setback over the weekend.
Tina, fondly known as “princess” confounded medics by turning 17 last September as most sufferers normally do not live longer than the age of 12.
According to her family, Tina had been due to travel to the US later this year for groundbreaking Alpers treatment.
Her cousin Sarah Crowe, who had been the longest living person with the disease died last year.
For those unaware, Alpers is a progressive neurological disorder that begins and is complicated in many instances by serious liver disease.
Symptoms include increased muscle tone with exaggerated reflexes, seizures and loss of cognitive ability.
Tina’s mother Mags campaigned vigorously to legalise medicinal cannabis oil remedies for her Tina and others. Tina suffered scores of life-threatening seizures daily.
Last year, Tina was seizure free for eight months following a medicinal cannabis oil treatment at the Kapala Clinic in Spain.
Mags said: "Tina wouldn’t have wanted anyone attending her funeral wearing black. She loved nice bright colours so we would like to honour that.
Mags wished for supporters to donate to a charity that promotes medicinal cannabis: "I would love if people would donate rather than bring wreaths to Billy’s Bud, a campaign which backs the use of prescribed medicinal cannabis for those suffering from particular types of seizures."
The mother of the late Tina said she would remember her daughter by lending her voice to the fight for medicinal cannabis: "I am going to continue to fight for the right to use medicinal cannabis as Tina proved to us that is does work. I owe that to her.
She said that Tina, more than anything, wanted to make it to 18 years of age: "I’m really heartbroken. All the family are as despite all her ailments she was such an outgoing girl. Tina fought for so long to stay in this world. She didn't want to leave us...Tina really wanted to make it to her 18th birthday. We were all so lucky to have her in our lives. No words will ever express our loss and how much our princess meant to us all."
She said the cannabis greatly benefited her daughter's short life: "She defied all the odds for so long. Being seizure free for those few months last year due to the use of medicinal cannabis was unbelievable. To see her smile would make you feel so good and realise that life is so precious."
Mags said she will never forget her amazing daughter: "The hours, days, weeks, months indeed all the years ahead will never be the same without her. She will be forever and ever in our hearts."