Irish child with killer brain disease denied life saving treatment in New York

She deserves this and her brother an awful lot. PLEEEEEEEEEEEEAAAAAAAAAAASSSSSSSSE HELP...

Its unfair shes too young. Money doesnt matter people should get together and raise money. A childs life comes first. People raise money fast and stop being selfish. This child will die fast without your,ours help. Please agree. xxx

Dublinjas - I agree with you, but I would slightly reword it and say that the US is a world leader in medical research and the development of cutting-edge therapies. There is no question about that. However, the US does not lead the world in terms of delivering high quality care to the average American. Just consider that the hospital bed alone at Cornell's hospital probably costs about $1,600 per day. At least, that's what the hospital will bill Saoirse's parents for her stay. That's $48,000 for one month of inpatient care. People without health insurance who don't qualify for medical assistance through the state (you have to be pretty poor to qualify) and can't pay the bill on their own simply won't get admitted to a hospital. They won't get the procedure they need, so will stay at home and cope on their own, or perhaps try to manage their illness with a cheaper medical option. Sometimes they simply die. That's just the reality of the situation here. I mean, if Cornell really wanted to do the procedure, they could donate the room for her, and look how much closer her parent's would be to having enough money. There are ways to make this kind of thing happen if people just can muster up the will to do it.

I don't think the US. should be considered 'Just a Nation' when it comes to things Medical, I think we can all agree that it is a World leader in the field of medicine and as such it has rightly become a Mecca for those who seek treatments that are out of the box as well of course as hi tech medicine at the cutting edge, But it beggars belief how the fee of $750,000 was calculated and if this stands then I guess there comes a point where the treatment is just not accessible to this family sad to say. otherwise where do you draw the line. I hope I am wrong and I hope these children get into the program but it does not look promising.

The medical industry is just that - an industry. Cornell could probably find a way to do this procedure for $500,000 if they really wanted to. Someone who knows should look at how that $750,000 total is calculated. I bet there's a lot of profit and some pretty high salaries in there.

So much for Capitalism. One's life and health should never depend on how much money you can spend. International and national health care should be a basic human right and NOT determined by the size of your bank account. The world is a disgrace!

The Batten's Disease Research and Support Association (BDSRA.org) has an easy to understand online brochure about the disease. BDRSA's video, called "What is Batten's Diseases?" is availabe on YouTube.

Animals with disorders similar to Batten's have improved with therapies originating from stem cell research. The ban on human stem cell research was liften in early 2009 when Obama took office. Human embryos are a product of in vitro fertilization procedures, and are routinely discarded. These stem cells might have been used in the search for a cure for Batten's, but the delay is now behind us.

The Obama administration's economic stimulus program is now funding research into Batten's, raising the possiblility that families in the future won't go through the same ordeal as the Heffernans.

May all of our prayers be with Saoirse and her brother Liam, as well as their parents. I too, am upset at the staggering cost and seemingly insurmountable barriers that lay between these children and their badly needed treatments for what currently is an ultimately fatal disease. Also, I wanted to comment on the remarks made here by “baileyBD”, wherein the writer states that “Obamacare is about to take hold and ruin it” when referring to the current state of American Health Care! If the writer and all the rest of those who delight in bashing President Obama with uninformed comments about “socialized medicine, and how Insurance companies are suffering or doctors rethinking their career choices and companies dropping new retirees from medical packages”. This is nothing more than fear mongering and throwing around lies and misstated facts so as to scare and upset their fellow Americans due to the coming elections in November. The truth of the matter is that “baileyBD” and the Tea Partyers along with Republicans (which is really redundant), either have not read the law or they don’t understand it? Insurance companies are still racking in the big bucks, and are far from closing anything! This “Obamacare” as baileyBD referred to, will now allow millions more of Americans to have health care! Tea Party members also blame the President with trying to raise taxes. They try and make it sound as if all Americans will get a tax increase, but the truth is it’s a tax for the wealthiest 3% of Americans who earn more than $250,000 per year. So, how about we all step away from the politics and return to our concerns for these children! The only money we should be talking about is donations for Saoirse and Liam. Slan

Mmnnnn. very interesting.Very sad.

baileyBD: Unfortunately, we do not have the best medical care in the world. Considering the entire service system and patients in all income levels, the US ranks #37 on the WHO list of countries in terms of quality of care. When one only considers the care available to the wealthiest Americans, then the US would be #1, but just for the population groups who can afford to pay out of pocket. Just because the best healthcare "exists" in the US doesn't mean people can actually receive it. That takes the kind of money most people just don't have. BTW - which country ranks #1? France.

baileyBD, see the last page of this article for where to send donations. You sound like a medical professional, maybe you can help.

I am an American and can verify that we DO indeed have the best medical care in the world. Free market practices have created this fact. You do NOT need to be very wealthy or very poor to receive care. At least for the time being, as Obamacare is about to take hold and ruin it. Just the threat/promise of socialized medicine has many insurance companies already closing up shop, doctors rethinking their career choices and companies dropping new retirees from their medical benefit package. That being said, please remember that Saoirse was part of a study or experimental program, not seeking "normal" care. Plus, the majority of us here did not even know about Saoirse. How can one contribute to the fund to make sure she is able to participate in the less stressful/physically demanding treatment that she does qualify for?

I think that the United States lets other children come to the states for treatment free of cost. Why would they deny her the treatment she needs? Its appalling and cruel. She is stuck in the middle of not being rich enough and not being poor enough. Its insane..I will pray that clearer heads will prevail and she will soon be here to receive her treatment.

That's why people say America has the best medical care in the world - except one can't access it unless you're very wealthy or very poor. I'm sorry to hear that Saoirse must wait again.

If people knew the amount of wasted money in medical research it would be a bigger scandal than Watergate.