Tuesday 6 December 2016

'I'm 45, I love life, I love my family and friends - I just want to be given a chance'

Mum in race against time for life-saving treatment 'overwhelmed' by public support

Published 14/04/2016 | 18:45

The Irish mother who has appealed for funds for a life-saving transplant has felt her hopes of success soar as public donations flood in.

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Marina Jordan Killoran (45) suffers with an incurable auto-immune disease called Systemic Scleroderma and is going to die if she doesn’t raise enough money for the stem cell transplant.

"My hands started to go at first, just a tingling sensation. And when I used to go on long walks, my hands were turning a bluish/whitish colour, and when I came home I'd have to get them under the hot tap to get them warm again," she told independent.ie.

"Apart from that it was extreme fatigue. I led a very big life and I couldn't understand why I was getting more and more tired. I began to rest more thinking that I was getting a head cold - because that's what it was like at the start."

Marina and Alan Killoran at their home in Newbridge Credit: Kyran O'Brien
Marina and Alan Killoran at their home in Newbridge Credit: Kyran O'Brien
Marina and Alan Killoran at their home in Newbridge Credit: Kyran O'Brien
Marina and Alan Killoran at their home in Newbridge Credit: Kyran O'Brien

By the time Marina's disease was diagnosed, her lungs were at 40pc capacity and she had developed a chronic cough. After six months of chemotherapy, which made her nauseous and tired, Marina's lung capacity rose to 70pc.

But although this treatment brought the illness under control, it wasn't a cure for the illness which is slowly killing the mother-of-two.

After posting a heart-breaking video online with the help of her friends earlier this week, support for the sick mum-of-two has been "overwhelming".

"I never anticipated anything like this response [to the fundraising campaign]. I'm flabbergasted, I'm totally shocked. The public reception and the support has just been overwhelming," Marina said.

"We really feel like we're going to get there."

Hope

Her husband Alan and their two daughters had almost lost all hope that they would lose her - until they discovered the treatment being pursued by Dr Richard Burt of The Northwest Memorial Hospital in Chicago.

In February, Marina travelled to the hospital to be assessed for the FDA approved stem cell treatment - which essentially "reboots" the immune system.

She was given approval after a series of invasive tests but as her condition continues to deteriorate, she may not be well enough to go ahead with the transplant in several months' time.

"Time is of the essence - the sooner, the better I get back there. If I leave it until next year it will be too late," she said.

Marina Killoran at her home in Newbridge Credit: Kyran O'Brien
Marina Killoran at her home in Newbridge Credit: Kyran O'Brien
Marina Killoran at her home in Newbridge Credit: Kyran O'Brien

"It's going to take time. I will be in isolation for a while, there's a long road ahead of me. I'm completely aware of this, I'm aware of all the pitfalls. It's a risk, but it's a calculated risk and I weigh that against the life that I have now.

"I am 45 and I want to live my life I love life I love my family and friends - and I just want to be given a chance."

But the cost of the stem cell transplant, which doesn't include travel, accommodation or aftercare costs, stands at $125,000 (€109,000) - a "financial mountain" for the family.

In the last two days, the fund has increased significantly, from €21,000 to €85,000 at the last count earlier this morning.

"When I was over [in Chicago] for the assessment, which involved invasive tests, the surgeon told me that if there was any problems I should come back and go to the emergency room. That's when I realised that I didn't have any money to go into the emergency room.

"My immune system will be completely gone and I will have to wear a mask for 100 days - and you are going to pick up an infection so if I do have to go back in the €109,000 is not going to cover that."

Systemic Scleroderma or "thickened skin" essentially creates an overproduction of protein collagen in the body.

"Your body goes into overdrive and starts to deposit it willy-nilly all over your body," said Marina.

"Unfortunately I have the more severe form of the disease which means my internal organs are also affected. My lungs, my oesophagus and my stomach are now damaged. There's also an anomaly with my heart. 

"The calcinosis is building up in my wrists and my joints are getting worse. It's painful; I'm becoming really physically disabled.

"My lung function is deteriorating and now my heart is being damaged. If I leave it too late it really will be too late to get any type of treatment.

"I know this is my only chance - and this my chance to have a much better lease of life. I just exist - I don't live."

Support Marina here. You can also follow on Facebook and Twitter

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