'Time is running out' - Mum with incurable disease will die if money for life-saving transplant is not raised
Heartbroken husband Alan hears sick mum-of-two "grind her teeth with the intensity of the pain" at night
Published 11/04/2016 | 20:30
The husband of the mum at the centre of a campaign to raise funds for life-saving treatment is "eternally grateful" for the response from the public - but said there is still a "huge financial mountain to climb".
Marina Jordan Killoran (45), who suffers with an incurable auto-immune disease called Systemic Scleroderma, is going to die if she doesn’t raise enough money for the stem cell transplant.
Her husband Alan said that due to the exposure on independent.ie, the campaign has received a "phenomenal response, which is just incredible".
"Due to the coverage on independent.ie, we have seen our fund balance raise from €21,000 by around €50,000," he said.
But, for the mum-of two, the target to raise $125,000 (€109,000) to pay for a stem cell transplant - which doesn't even include travel or accommodation costs - is still a long way off.
"People have been amazing with their generosity and support. It's amazing how even just a few kind words of support can lift our spirits," said Alan.
"But while our incredible friends and family have organised benefit nights, marathon sponsorships and swims in the 40 foot [Dun Laoghaire pier], we would need 50 of those events to raise the kind of money that we need. Time is running out."
Originally from Tallaght, Marina and Alan moved to Newbridge in Co Kildare with their young family in 2001. They enjoyed an active outdoor life, going for "walks for miles in the countryside" before Marina fell ill over eight years ago.
"Marina has gone from a person who was so physically active, she never smoked or drank, to a person who has absolutely no quality of life - she's in bed 23 hours hours a day," Alan told independent.ie.
"I'm the one at night who hears her whimper. I can hear her when she's half asleep and she grinds her teeth with the intensity of the pain."
Alan, who has become a full-time carer for Marina in the last three years, said that she remains to be a "magnificent mother" to 20-year-old drama student Shannon and 5th Year student Erin (16).
"The girls really don't know any different, they have grown up with a sick mother. The girls will help her with her makeup and her hair if she has to go out to the hospital," said Alan.
Marina had almost lost all hope that her autoimmune disease was slowly killing her - until they discovered the treatment being pursued by Dr Richard Burt of The Northwest Memorial Hospital in Chicago.
“I had resigned myself to the fact that I was just going to be a widower and spend the rest of my days struggling on without the love of a wife,” he said.
In February, they travelled to the hospital to be assessed for the FDA approved stem cell treatment - which essentially "reboots" the immune system - which is currently not available in Ireland.
Despite a slight anomaly in her heart, Dr Butt approved her for groundbreaking treatment, tweaked to be "cardiac-friendly".
However, the price of the transplant is $125,000 and assistance from the HSE for treatment abroad does not extend to the United States.
In a heartbreaking video Marina begged members of the public to save her life.
“I know if I don’t receive this treatment, I will die. Unfortunately the cost of the transplant is $125,000 and it’s a lot of money and it is money that we just don’t have.”
Heartbroken husband Alan said that he never expected their family to be in a situation where he would have to appeal to the public for money.
"We've contemplated selling our home - if we had more equity that it definitely something we would do." he said.
"It's so awful, it's a horrible situation, I would sell my soul to the devil if I knew that it would raise the money that we need."
He said is determined not to lose his wife: “When you know that something is within your grasp, it is just so difficult to just kind of accept that.
“So we are determined, myself and my girls are determined, we are not going to allow my wife, and their mother to die.”
In the meantime, Marina’s condition continues to deteriorate, the fear being that she may not be well enough to go ahead with the transplant in several months time.
In six weeks time, the hospital in Chicago will want to re-assess her to check that she is still well enough to proceed with the transplant.
Apart from it costing a further $30,000 (€26,300) for re-assessment, she most likely will not pass the process this time.
Marina's illness causes a buildup of collagen on all her internal organs, her hands and her joints. She has trouble walking, her lungs have been damaged and she has difficulty eating with problems with her stomach and her oesophagus.
"Our fear that if it goes they will have to reassess her - even if her lung function is down slightly that might scupper her chances," Alan told independent.ie.
Marina's story has reached the "stratosphere" following coverage with independent.ie, Alan said, and other media outlets have been in touch with the family to highlight the urgency of the fundraising campaign.