Thursday 23 November 2017

Family claims terminally ill Irish teen's condition improving with Cannabis oil: 'We would do anything to help her'

Tina with her mum Margaret
Tina with her mum Margaret

Kathy Armstrong

A terminally ill teenager's condition has greatly improved thanks to Cannabis oil treatment, her family has claimed.

Tina McElligott (16)  is the oldest living person in the world with Alpers, a rare degenerative neurological condition and symptoms can include seizures, intellectual disabilities and stiffness of the limbs.

Tina - who isn't aware that she has Alpers - was only diagnosed in April 2016 and was given a prognosis of around six months to live last year.

Tina, who is from Kilflynn in north Kerry, is now in Spain with her mum Margaret, where she is receiving Cannabis oil treatment at a hospital in Barcelona and her family say her quality of life is rapidly improving but they need financial help to stay over there.

Tina before Alpers took hold
Tina before Alpers took hold

Tina's niece Jennifer Keane told Independent.ie how Tina's life was turned upside down: "She has a tremor in her hand and it was constantly shaking so she couldn't hold a cup or a spoon or anything and she had so much pain in it.

"Her balance was becoming more unsteady.

"She's had epilepsy all her life but when the tremor started she was brought back to Dublin and she was diagnosed then with Alpers.

"She actually had a cousin who was diagnosed with Alpers when she was three, who died when they were 13 but we never connected that Tina could have it too.

Tina's condition rapidly deteriorated after she was diagnosed with Alpers
Tina's condition rapidly deteriorated after she was diagnosed with Alpers

"Her condition got a good bit worse, they had introduced palliative care so she'd be made more comfortable."

Read More: Spain is 'last thing left to try' for young Tina

Jennifer spoke fondly about her aunt and how hard it is to see her condition deteriorate.

She said: "She's a bubbly child, she'd talk to the wall if it would talk back to her.

"She loves music and dancing and princess parties, everything most girls love but then she gets upset because she feels in her head that she's not normal and she doesn't want to go up dancing."

After a lot of research they heard about the benefits of Cannabis oil for helping Tina's symptoms but she would not be able to legally get it in Ireland so Margaret decided to move over with her to Spain.

Jennifer said: "She was taken to Spain in the last week of April and she's now taking Cannabis oil.

"They're weaning her off some of the 20-25 tablets per day she was taking and she's thriving, the pain in her hand is greatly reduced, she's still having seizures but they're not as severe and not as often.

"She could have twenty seizures a day before that, they could be big ones and completely tire her out.

"It got to a point where she couldn't dress herself or whatever but with the oil she's able to do those bits again.

"She's not able to walk very far and she has a wheelchair but she is getting better every day that she's there."

Read More: Tina responding 'very positively' to cannabis oil but funds still needed

She continued to say that they feel this could be their best shot at helping Tina.

Jennifer said: "They want to keep her there for another three months until they can wean her off the tablets she doesn't need to be on and then she'll be solely on Cannabis oil.

"It's like epilepsy, you get constant seizures and then the tablets that you're taking are deteriorating your liver and your kidneys.

"Every palliative care person we met said it's not the Alpers that kills them in the end but the medicine they're taking for it.

"Hopefully when she comes home she won't be on as much tablets so her body won't be deteriorating as much, we know it's not a cure, we just want to prolong her life.

"Last year they gave us six months but we are hoping it could add a few years to her life.

"She's only 16 and you'd do everything you can to keep her."

The family have set up a Go Fund Me page, this money wi;ll be used to pay for Tina's treatment and to support her and Margaret in Spain.

Jennifer said: "People have been amazing, the support is unreal and we're just hoping to keep that momentum going."

While Jennifer stresses that while she knows Cannabis oil isn't a cure, she thinks it should be available to help people with certain conditions to manage their symptoms.

She said: "We were all kind of iffy about it at the start but Tina is a prime example that it does work.

"I think in certain cases like for people with conditions like MS or Alpers it should be allowed, if it can improve your quality of life that's all you want.

"Tina says that all she wants is to be a normal little girl and this is helping her."

For more information on Alpers and how to donate please visit here.

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