Monday 26 September 2016

'We're going to get there' - Irish mother with rare disease has just enough money to pay for life-saving transplant

Published 15/04/2016 | 19:17

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

The Irish mother at the centre of a fundraising campaign for life-saving treatment has made contact with the US hospital for a preliminary transplant date.

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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 receive a stem cell transplant, which is not available in Ireland.

Her husband Alan and their two daughters Shannon (20) and Erin (16) had almost lost all hope that they would lose her to the disease- 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 - and was approved - for the stem cell treatment, which costs $125,000 (€109,000), not including travel, accommodation or aftercare expenses.

A fundraising campaign launched by Marina's family and friends in an attempt to collect enough money to pay for the groundbreaking treatment attracted the attention of the media - and the hearts of the nation - when the mother-of-two released a heartbreaking video online.

In the last week, donations have been flooding in by cheque, through the ifundraise account and directly to the fund bank account as the public lobbied to give Marina the chance she desperately needs.

At last count this evening, the fund stands at an incredible €107,000 - just several thousand below the family's initial target.

"We essentially have enough to pay for the transplant," an ecstatic Alan told independent.ie this evening.

Marina, Alan and their daughters Shannon and Erin.

"Last night we were in contact with someone from the hospital [in Chicago] and we have a preliminary date booked in for the end of June.

"We were hoping we would be able to get an earlier appointment but at least this gives us some breathing space to raise more funds."

Marina's transplant date will not be fully confirmed until the entire amount of the operation is paid for - and the funds raised through ifundraise will not be released until the end of the month.

"We won't really be able to look at flights until the end of the month when we are able to transfer the funds to the hospital and get a date set in stone," said Alan.

"But it's such a huge relief - we're actually going to get there."

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

Marina has the more severe form of the disease which means her internal organs are also affected. Her lungs, oesophagus and stomach are now damaged - and there is also an anomaly with my heart.

"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," she said in a video with independent.ie yesterday.

"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."

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