Irish Family Seeks Help From America for Their Dying Children

theboxer

After both their children were diagnosed with a fatal disease, a husband and wife living in County Kerry, have begun fundraising to bring their babies to the United States for clinical trials that just may save their lives.
Saoirse and Liam Heffernan were diagnosed with Batten's Disease, a rare disorder that will eventually end their lives if a cure isn't found.
(Courtesy Irish Central)

"If we don't do this our children will die," Tony Heffernan told the Irish Voice from his home in Keel, Co. Kerry on Monday.
Heffernan, 38, is the proud father of 4-year-old Saoirse and 22-month-old Liam.
Both children have a rare disease called Late Infantile Neuronal Ceroid Lipofuscinosis (LINCL), or Batten's Disease, that will eventually end their lives if a cure isn't found.
Heffernan and his wife Mary, 34, were elated when their first child was born. Saoirse was the light in their day.
While Heffernan, a ships captain by trade who currently works with Hoegh shipping enterprise, and his wife, a stay at home mom, were enjoying the endless pleasures that came with having a daughter, they became worried in January 2009 when Saoirse started having seizures.



All donations help. The scum in the Dail have helped bail out Greece, the banks and what have you. Whilst ignoring these Irish citizen children.


Time to give a dig out to our own.


Give up one of your pints this weekend and donate the saving towards an Irish childer.:)

aDeener

theboxer wrote: »

After both their children were diagnosed with a fatal disease, a husband and wife living in County Kerry, have begun fundraising to bring their babies to the United States for clinical trials that just may save their lives.
Saoirse and Liam Heffernan were diagnosed with Batten's Disease, a rare disorder that will eventually end their lives if a cure isn't found.
(Courtesy Irish Central)

"If we don't do this our children will die," Tony Heffernan told the Irish Voice from his home in Keel, Co. Kerry on Monday.
Heffernan, 38, is the proud father of 4-year-old Saoirse and 22-month-old Liam.
Both children have a rare disease called Late Infantile Neuronal Ceroid Lipofuscinosis (LINCL), or Batten's Disease, that will eventually end their lives if a cure isn't found.
Heffernan and his wife Mary, 34, were elated when their first child was born. Saoirse was the light in their day.
While Heffernan, a ships captain by trade who currently works with Hoegh shipping enterprise, and his wife, a stay at home mom, were enjoying the endless pleasures that came with having a daughter, they became worried in January 2009 when Saoirse started having seizures.



All donations help. The scum in the Dail have helped bail out Greece, the banks and what have you. Whilst ignoring these Irish citizen children.


Time to give a dig out to our own.


Give up one of your pints this weekend and donate the saving towards an Irish childer.:)

i was going to say in before rabble rabble fianna fail but op more or less got there

xzanti

Do they not realise we're having a head shop crisis.. some people can be so self involved :rolleyes:

walshb

Yeah, donations shouldn't be required here, the Irish Government should be helping this child, I mean, they can ship close to a Billion Euro per year to the "third" world.

funk-you

Get Joe Duffy on it. We all know him and his gang of enraged Daily Star readers really run the place. Think of the children....right?

-Funk

enda1

OP wants to send dying children to America to help a US drug firms research?

Hmm, I think I'll opt out thanks.

General Zod

walshb wrote: »

Yeah, donations shouldn't be required here, the Irish Government should be helping this child, I mean, they can ship close to a Billion Euro per year to the "third" world.

what is it with you and Africa?

walshb

General Zod wrote: »

what is it with you and Africa?

What is with you, and me?

Canis Lupus

walshb wrote: »

What is with you, and me?

Love is in the air dum dum dum dum dum dum dum love is in the aaaaiiiir.

General Zod

walshb wrote: »

What is with you, and me?

you keep making threads into digs at Africa, I'll keep calling you on it.

walshb

General Zod wrote: »

you keep making threads into digs at Africa, I'll keep calling you on it.

Oh, I thought it was something else, something interesting.

Anyway, back on topic....

General Zod

walshb wrote: »

Oh, I thought it was something else, something interesting.

Anyway, back on topic....

While I'm flattered, you're not my type.

On topic, here's a bit mroe about Batten's disease:
http://www.ninds.nih.gov/disorders/batten/detail_batten.htm

it's a genetic disorder with no known cure. these kids and their parents should recieve as much help as is available to make their kid's lives as comfortable as possible, but no amount of money will find a cure.

Nodin

walshb wrote: »

What is with you, and me?

I think its just your thing with Africa. If you stopped dragging it around, people probably wouldn't comment.

seamus

Jesus, these guys seems to be everywhere.

Here's a question: Why would we spend hundreds of thousands of euro sending these two children to the United States and not any of the other thousands of children in this country who are dying from incurable diseases?

Oh that's right, because their Daddies haven't gone on a crusade and put their cute little faces into every media outlet to tug at heart strings.

Don't get me wrong, I feel sorry for the couple, it has to be heart-wrenching, but they're aren't a "special case". They are two more kids with a fatal degenerative disease for which there is no known cure. They have a very rare disease which this country is unlikely to see again for another couple of decades. We would be better off helping to find a cure for motor neuron disease, an equally horrific disease with no known cure and which eventually kills every one of its sufferers.

So you can donate to this particular cause if you feel for the family. Or you can make the logical choice and donate to a charity (such as the Irish Cancer Society) where the potential to save lives is exponentially larger than researching an insanely rare and genetic disease.

Heartless, maybe, but I don't like seeing anyone's plight being raised above another equally valid plight on account of relentless campaigning.

mikom

Going well, this thread.

WindSock

Well I guess if ones only 2 kids had the chance to be treated they would be relentlessly campaigning too. Same argument for the Maddie McCann fiasco. People complained that hundreds of kids go missing per day, and why should these get more coverage than them? Well it's because the parents used every avenue open to them that is available. I would like to think that I would do the same.

arybvtcw0eolkf

General Zod wrote: »

what is it with you and Africa?

Are you going off topic to deliberately start an argument?.

He said sweet F'A about Africa in this thread.

OP I seen that little lad on TV3 the other day, very sad.

But I've recently given to the Mannix Kane appeal made through TV3.

I did see this family on TV recently and had put the story on the back burner, I'll throw something their way now - thanks.

General Zod

Mikaela Most Uncle wrote: »

Are you going off topic to deliberately start an argument?.

He said sweet F'A about Africa in this thread.

Yeah, donations shouldn't be required here, the Irish Government should be helping this child, I mean, they can ship close to a Billion Euro per year to the "third" world.

walshb regularly does this. I called him on it, we moved on. You brought it up again. I'm eating a ham sandwich.

Gigiwagga

seamus wrote: »

Jesus, these guys seems to be everywhere.

Here's a question: Why would we spend hundreds of thousands of euro sending these two children to the United States and not any of the other thousands of children in this country who are dying from incurable diseases?

Oh that's right, because their Daddies haven't gone on a crusade and put their cute little faces into every media outlet to tug at heart strings.

Don't get me wrong, I feel sorry for the couple, it has to be heart-wrenching, but they're aren't a "special case". They are two more kids with a fatal degenerative disease for which there is no known cure. They have a very rare disease which this country is unlikely to see again for another couple of decades. We would be better off helping to find a cure for motor neuron disease, an equally horrific disease with no known cure and which eventually kills every one of its sufferers.

So you can donate to this particular cause if you feel for the family. Or you can make the logical choice and donate to a charity (such as the Irish Cancer Society) where the potential to save lives is exponentially larger than researching an insanely rare and genetic disease.

Heartless, maybe, but I don't like seeing anyone's plight being raised above another equally valid plight on account of relentless campaigning.

You're kidding right. Since when have the ICS done much if anything to develop/fund research to find actual cures for the treatment of any kind of cancer ? The Irish Cancer Society are very closely aligned to Big Pharma and, as we all know Big Pharma are primarily interested in profit profit profit. When new developments appear on the horizon ie DCA, Vitamin D etc they are poopooed, why? because there is no money, no patent, no control, so no interest. Big Pharma and the Irish Cancer Society are interested in their own agendas and their own bottom line.

Recently the Presidential Cancer Panel broke ranks with the American Cancer Society and finally declared many truths about cancer causing agents in our environment, ie xrays/scans etc and were vilified by the ACS.
Read about it here http://www.naturalnews.com/028765_environmental_chemicals_cancer.html

Interesting that the Irish Cancer Society were in the news recently telling people that the best way of avoiding skin cancer is to prevent exposure to the sun. Good science tells us that Vitamin D (which we get from exposure to sunlight) prevents numerous forms of cancer including skin cancer.

The increase in skin cancer cases seems to coincide with the increased use of skin creams/sun blocks.

I'm not suggesting for one second we should fry ourselves while on holiday, too much of anything is not good. But moderate exposure is essential for good health, Vitamin D also very much improves our mood.

General Zod

Gigiwagga wrote: »

You're kidding right. Since when have the ICS done much if anything to develop/fund research to find actual cures for the treatment of any kind of cancer ? The Irish Cancer Society are very closely aligned to Big Pharma
.

You're kidding, right?

walshb

seamus wrote: »

Jesus, these guys seems to be everywhere.

Here's a question: Why would we spend hundreds of thousands of euro sending these two children to the United States and not any of the other thousands of children in this country who are dying from incurable diseases?

Oh that's right, because their Daddies haven't gone on a crusade and put their cute little faces into every media outlet to tug at heart strings.

Don't get me wrong, I feel sorry for the couple, it has to be heart-wrenching, but they're aren't a "special case". They are two more kids with a fatal degenerative disease for which there is no known cure. They have a very rare disease which this country is unlikely to see again for another couple of decades. We would be better off helping to find a cure for motor neuron disease, an equally horrific disease with no known cure and which eventually kills every one of its sufferers.

So you can donate to this particular cause if you feel for the family. Or you can make the logical choice and donate to a charity (such as the Irish Cancer Society) where the potential to save lives is exponentially larger than researching an insanely rare and genetic disease.

Heartless, maybe, but I don't like seeing anyone's plight being raised above another equally valid plight on account of relentless campaigning.

Well, how about we send all the others too; I would gladly like to see my tax go towards this. If this country cannot save them maybe the U.S. can. It wouldn't cost all that much would it, at least in relation to some other monies that this state throws away on absolute crap.

General Zod

walshb wrote: »

Well, how about we send all the others too; I would gladly like to see my tax go towards this. If this country cannot save them maybe the U.S. can.

The US can't save them.

Wile E. Coyote

seamus wrote: »

Jesus, these guys seems to be everywhere.

Here's a question: Why would we spend hundreds of thousands of euro sending these two children to the United States and not any of the other thousands of children in this country who are dying from incurable diseases?

Oh that's right, because their Daddies haven't gone on a crusade and put their cute little faces into every media outlet to tug at heart strings.

Don't get me wrong, I feel sorry for the couple, it has to be heart-wrenching, but they're aren't a "special case". They are two more kids with a fatal degenerative disease for which there is no known cure. They have a very rare disease which this country is unlikely to see again for another couple of decades. We would be better off helping to find a cure for motor neuron disease, an equally horrific disease with no known cure and which eventually kills every one of its sufferers.

So you can donate to this particular cause if you feel for the family. Or you can make the logical choice and donate to a charity (such as the Irish Cancer Society) where the potential to save lives is exponentially larger than researching an insanely rare and genetic disease.

Heartless, maybe, but I don't like seeing anyone's plight being raised above another equally valid plight on account of relentless campaigning.

Are you seriously telling me that if these were your kids you wouldn't do everything in your power to help find a cure to save them? You'd turn to them and say, 'Tough sh*t. I'm going to go help some kids who can be saved. You two are lost causes!'

How do you think cures are found for diseases like this? It's because people, like the parents of these kids, do all they can to raise awareness to help find the cure. No illness ever came with an automatic cure. It takes time and it takes lots of funding. Even your 'logical' choice, The Irish Cancer Society' had to start somewhere.

walshb

General Zod wrote: »

The US can't save them.

So what is the point to the thread then? I said "maybe."

General Zod

Wile E. Coyote wrote: »

Are you seriously telling me that if these were your kids you wouldn't do everything in your power to help find a cure to save them?

Can't speak for seamus, but I'd do everything in my power to make sure my children were comfortable and had as much quality of life as possible. I'd do everything I can to raise awareness of the disorder and fundraise for more research, so that hopefully one day other parents wouldn't have to go through what I had gone through.

that's just me. your milage may vary.

seamus

Gigiwagga wrote: »

The Irish Cancer Society are very closely aligned to Big Pharma

Well, they're not planning on sending the kids to a holistic therapist in the US.

Interesting that the Irish Cancer Society were in the news recently telling people that the best way of avoiding skin cancer is to prevent exposure to the sun.

Actually, they said avoid excessive or prolonged exposure to the sun and sunbeds. I've never once heard someone talk about skin cancer and *not* mention the benefits of a moderate amount of sun exposure.

walshb wrote: »

Well, how about we send all the others too; I would gladly like to see my tax go towards this. If this country cannot save them maybe the U.S. can. It wouldn't cost all that much would it, at least in relation to some other monies that this state throws away on absolute crap.

So send (for argument's sake) 1,000 Irish children to the United States for treatment and research, at a cost exceeding USD1,000,000 per year, per child (medicine in the US isn't cheap doncha know)? Noble and all, but we're trying to run a country here. We can help the sick children in our society, but we can't afford to throw $1 billion a year at them. If it was that simple, we'd just outsource our entire hospital system and save money.

Wile E. Coyote wrote: »

Are you seriously telling me that if these were your kids you wouldn't do everything in your power to help find a cure to save them? You'd turn to them and say, 'Tough sh*t. I'm going to go help some kids who can be saved. You two are lost causes!'

But it's not me is it? I'm the one who's being asked for money, I'm perfectly entitled to say, "Eh....someone over here asked me first", or "My own money is better spent on this other more prevalent disease, sorry about that".

I don't see how this is suddenly the Government's fault. The children are being cared for by our medical system. There's nothing more we can do above that. If these children were being denied medical treatment or the parents were being asked to foot the bill for their treatment in Irish hospitals, yep I'd be up there giving out. But they're not. Irish society and Irish government hasn't failed these kids.

plein de force

Gigiwagga wrote: »

You're kidding right. Since when have the ICS done much if anything to develop/fund research to find actual cures for the treatment of any kind of cancer ? The Irish Cancer Society are very closely aligned to Big Pharma and, as we all know Big Pharma are primarily interested in profit profit profit. When new developments appear on the horizon ie DCA, Vitamin D etc they are poopooed, why? because there is no money, no patent, no control, so no interest. Big Pharma and the Irish Cancer Society are interested in their own agendas and their own bottom line.

Recently the Presidential Cancer Panel broke ranks with the American Cancer Society and finally declared many truths about cancer causing agents in our environment, ie xrays/scans etc and were vilified by the ACS.
Read about it here http://www.naturalnews.com/028765_environmental_chemicals_cancer.html

Interesting that the Irish Cancer Society were in the news recently telling people that the best way of avoiding skin cancer is to prevent exposure to the sun. Good science tells us that Vitamin D (which we get from exposure to sunlight) prevents numerous forms of cancer including skin cancer.

The increase in skin cancer cases seems to coincide with the increased use of skin creams/sun blocks.

I'm not suggesting for one second we should fry ourselves while on holiday, too much of anything is not good. But moderate exposure is essential for good health, Vitamin D also very much improves our mood.

i have a problem with that article, it keeps saying "many chemicals" but fails to tell us what chemicals.

Capt'n Midnight

walshb wrote: »

Yeah, donations shouldn't be required here, the Irish Government should be helping this child, I mean, they can ship close to a Billion Euro per year to the "third" world.

7 April 2009 http://www.comhlamh.org/3165

The ODA budget has been cut no less then four times since June last year. By €45 million in July 2008, €15 million in October 2008, €95 million in February 2009 and €100 million today
• Ireland’s aid promises are directly linked to size of our economy. The aid targets are set as a percentage of gross national income (GNI) – as the economy shrinks, so does the aid budget. An 8% fall in national income should proportionately result in a cut of €71 million to the aid budget, not a cut of €195 million in less then a year.

Actually the cut is worse because there was a previous commitment to increase to 0.7% of GDP by 2012 , currently it's less than 0.5%

theboxer

aDeener wrote: »

i was going to say in before rabble rabble fianna fail but op more or less got there

Hi aDeener,

I had a fair few beers on board when I posted this very thread. I came home, checked my emails and received this story from my sister. I am a lucky one. My family are healthy, I have a fair few quid in my pocked and own my property. I am lucky. I started this thread so that those similar to myself, those who can afford it, can send the family a few quid. Its a good cause. I am well aware that an awful lot of Irish families are stuggling at present.

I am going without my beloved ciggies for the next two weeks. Along with my original donation, the additional cash I save from not smoking, will also go to the two childers. If I give up completely(touch wood) I will donate the savings to them too.

theboxer

enda1 wrote: »

OP wants to send dying children to America to help a US drug firms research?

Hmm, I think I'll opt out thanks.

No, the OP wants to give two Irish children the chance to live.

Thanks.

theboxer

Mikaela Most Uncle wrote: »

OP I seen that little lad on TV3 the other day, very sad.

But I've recently given to the Mannix Kane appeal made through TV3.

I did see this family on TV recently and had put the story on the back burner, I'll throw something their way now - thanks.

Thanks for making me aware of that appeal, Mac.

We, the Irish people, often speak about our disgust at how the government make cuts. About how the government treat those most in need appallingly. I am guilty of it, in this very thread. Then, some of us, go out and drop a couple of hundred euro on a night out. Once again, I am guilty of it. Insteas of getting a taxi home, get the bus if it possible. Instead of ordering a large round of vodaks at the end of the night/last orders, order a wee bottle of beer. Like me, stave off the smokes for a couple of hours/days/weeks and donate the savings, if you are in a financial poosition to do so.

We are talking about Irish citizens here. Children, they may be. But they are the future of our nation. Lets help them in anyway we can.

Dj Stiggie

Isn't the point to send these kids to America for clinical trials? This suggests that by sending them, they will be given new/previously untried/untested medication that could potentially save their lives?

Fair play to the people donating and making sacrifices so they can help these children.

As for the people saying they're not worth it and they won't be cured, you're really adding to the thread, well done

General Zod

Dj Stiggie wrote: »

As for the people saying they're not worth it and they won't be cured, you're really adding to the thread, well done

they've invented tablets that change your genetics?

Dudess

seamus wrote: »

Jesus, these guys seems to be everywhere.

Here's a question: Why would we spend hundreds of thousands of euro sending these two children to the United States and not any of the other thousands of children in this country who are dying from incurable diseases?

Oh that's right, because their Daddies haven't gone on a crusade and put their cute little faces into every media outlet to tug at heart strings.

You make it seem like it's something sinister or cynical. As WindSock said, of course any parent with the werewithal will go to whatever lengths they can. It might appear manipulative, but that's not the intention behind it - it's pretty black and white: your child is seriously ill/missing, you'll do whatever you can to save them. If you have more means at your disposal than someone in Nepal whose child has been trafficked, well it's unfair on them of course, but that doesn't mean you shouldn't still go to those lengths to raise awareness.

Gigiwagga

plein de force wrote: »

i have a problem with that article, it keeps saying "many chemicals" but fails to tell us what chemicals.

You seem to be unable to find the actual report itself, so please let me help...

http://deainfo.nci.nih.gov/advisory/pcp/pcp08-09rpt/PCP_Report_08-09_508.pdf

This is real, this breaks with Big Pharma's control of the whole cancer PR debate. This report changes the gameplan, about time too.

General Zod

Gigiwagga wrote: »

You seem to be unable to find the actual report itself, so please let me help...

http://deainfo.nci.nih.gov/advisory/pcp/pcp08-09rpt/PCP_Report_08-09_508.pdf

This is real, this breaks with Big Pharma's control of the whole cancer PR debate. This report changes the gameplan, about time too.

What exactly will it change in "big pharmas" game plan?

Capt'n Midnight

theboxer wrote: »

We are talking about Irish citizens here. Children, they may be. But they are the future of our nation. Lets help them in anyway we can.

If you want to help children then primary school funding is probably the most cost efficient way of doing so.

There was something on the radio about funding recently and primary school kids in Dublin have about €500 per year spent on them. It's more in other parts of the country and more for certain schools. But primary kids won't be voting for many years and so the damage is done.

For Governments to spend more money on something they must spend less on something else. If €1m would guarantee a cure that would mean the kids would be able to pay tax in a normal working life then it's a no-brainer. ( IIRC for older people a figure of €40,000 per year to keep the alive is a similar calculation ) That's roughly how much we spend to save lives by road improvements and in other areas. It's also why I get upset by wastage on a grand scale as each €1m roughly translates into another death unprevented, compare eVoting to cervical cancer vaccines.

Even in the good times our health system was funded in part by the public through Lotto and other fundraising, there isn't money to spare, it's more a matter of how many people can we treat with the available funds.


One thing though, how much of the money raised will be spent on the treatment itself and how much will be adsorbed by the health system, consultants wages and other overhead. Also considering how much the US government is funding research into diseases that only affect small numbers of people because there won't ever be enough to cover the R&D otherwise why do they need to pay so much ?