Help these little girls raise the money they need for surgery

Shut the front door

"A CORK MOTHER has been faced with the task of raising nearly €35,000 before 16 December to raise money for vitally-needed medical procedures for her twin daughters.

Audrey Murnane’s daughters Zoe and Maya were born prematurely last June. The fragile newborns were diagnosed with Long Segment Tracheal Stenosis, a condition that causes major blockages to their airways."

They have an opening in GOSH in London just before Christmas, but money is due in 10 days.

Here is the article,

http://www.thejournal.ie/cork-mother-attempting-to-raise-money-for-twins-medical-procedures-1207408-Dec2013/

It's really disheartening that in 2013 the HSE is still failing children, but one should not be shocked I suppose, but to tell the mother to call an ambulance if one of them turns blue is really low. Could they not just take the money from the sweet shop to pay for the surgery instead of giving it to some fat cats?

So instead of a cup of coffee today maybe we could all help these little girls have the most amazing Christmas ever, we could all play Santa today you know you want too!!!

seamus

At the risk of sounding insensitive, I don't see any HSE failure here.

From the article it appears that the mother has her heart set on a very specific procedure for this condition, where other procedures may exist. The HSE does not fund this specific procedure. The article is unclear as to whether HSE funding is available for other procedures.

Also interesting that you're not condemning GOSH who are refusing to perform this surgery on two very sick little girls unless they get payment for the entire surgery upfront. That's nice.

I really hope this works out for them, they get the donations and these girls go on to live full and happy lives. But I don't see any reason to bash the HSE here. And by jaysus there are plenty of reasons to bash the HSE, we don't need to invent fake ones.

Gongoozler

Feel kinda bad for them and all but don't see anybody else looking to get their medical bills paid for them by the rest of the nation.
I agree put it out there and if anyone wants to help so be it, but don't agree with using emotional blackmail.

SparkySpitfire

seamus wrote: »

At the risk of sounding insensitive, I don't see any HSE failure here.

From the article it appears that the mother has her heart set on a very specific procedure for this condition, where other procedures may exist. The HSE does not fund this specific procedure. The article is unclear as to whether HSE funding is available for other procedures.

Also interesting that you're not condemning GOSH who are refusing to perform this surgery on two very sick little girls unless they get payment for the entire surgery upfront. That's nice.

I really hope this works out for them, they get the donations and these girls go on to live full and happy lives. But I don't see any reason to bash the HSE here. And by jaysus there are plenty of reasons to bash the HSE, we don't need to invent fake ones.

Sounds like she wants this treatment because it's non-invasive, if the alternative is invasive, which one would you want for your child?

And why doesn't the HSE provide this treatment?

Agree with the other point on GOSH though.

Tangatagamadda Chaddabinga Bonga Bungo

seamus wrote: »

At the risk of sounding insensitive, I don't see any HSE failure here.

From the article it appears that the mother has her heart set on a very specific procedure for this condition, where other procedures may exist. The HSE does not fund this specific procedure. The article is unclear as to whether HSE funding is available for other procedures.

Also interesting that you're not condemning GOSH who are refusing to perform this surgery on two very sick little girls unless they get payment for the entire surgery upfront. That's nice.

I really hope this works out for them, they get the donations and these girls go on to live full and happy lives. But I don't see any reason to bash the HSE here. And by jaysus there are plenty of reasons to bash the HSE, we don't need to invent fake ones.

These are the only two girls in the country that have this specific condition. We fund a national health service. We all fund it with the intention that it will look after all of us, including our family and friends, when we get sick and need it.
If my girl needed this procedure and the HSE said 'call an ambulance if they turn blue' and turned their back on me I would feel very left down by them and would be more than a little bit pissed off.

Gongoozler wrote: »

Feel kinda bad for them and all but don't see anybody else looking to get their medical bills paid for them by the rest of the nation.
I agree put it out there and if anyone wants to help so be it, but don't agree with using emotional blackmail.

It says the girls mother is looking for vitally-needed medical procedures to help save her girls. Saying how it is, and looking for help isn't 'emotional blackmail' in my book.

emmabrighton

As a prem baby mom, I felt obliged to donate. These babies did nothing to deserve the condition that they now find themselves in. All prem babies require so much medical attention, my heart breaks for these tiny little tots that require more.

Fair enough, some people may not feel the same connection to premature babies so wont donate just as I would feel less of a connection to other conditions so may choose not to donate to their causes.

To each his own.

Surprised that GOSH not offering to do the surgery now and allowing the parents to pay back the costs in the future. Raise the money in time or surgery does not go ahead... yikes! I dread to think my little boy would be in the same predicament.

Fair play to the Munster Rugby team for showing their support.

keithclancy

Strange, I thought they could apply for an S2(Formerly E112) looks like they meet the criteria surely.

http://www.hse.ie/treatmentabroad/

People from the UK do it all the time to get treatment in other EU Countries.

Perhaps time is a factor.

seamus

SparkySpitfire wrote: »

Sounds like she wants this treatment because it's non-invasive, if the alternative is invasive, which one would you want for your child?

Unfortunately we don't necessarily get to choose in this manner. Plenty of people similarly refuse HSE-funded treatment in favour of newer or riskier treatments overseas.

As far as I know there is limited scope where the HSE will fund these alternative treatments, but at the end of the day it is an organisation with a budget so there has to be a line drawn where the HSE don't just spend money because the patients demand specific types of treatment.

And why doesn't the HSE provide this treatment?

Well, obviously the treatment isn't provided in this country because nobody's qualified to do it; there's no demand for this kind of surgery. The question here is why the HSE won't fund this specific surgery - what treatment will they fund?

Tangatagamadda Chaddabinga Bonga Bungo wrote: »

We fund a national health service. We all fund it with the intention that it will look after all of us, including our family and friends, when we get sick and need it.
If my girl needed this procedure and the HSE said 'call an ambulance if they turn blue' and turned their back on me I would feel very left down by them and would be more than a little bit pissed off.

Like I say above, I don't really see any evidence that the HSE is refusing to help or has "turned their back". The wording of the article suggests to me that the mother is refusing the assistance of the HSE and instead trying to tell the HSE what she wants them to provide.

The HSE has a budget for providing life-saving treatment abroad. And they use it, very regularly. That's why I'm skeptical of the claims that she's been abandoned by the HSE.

I'm very open to being proven wrong though.

Caledonia

I wondered about this as well.

I read through the Facebook page to get what it was about- the description in the Indo today is totally different.

They have had the surgery in Dublin and yes there is a lower survival rate than in Great Ormond but there are so few cases is it statistically different, are Crumlin doing enough to get good at them and ultimately these babies survived. The mam is v complimentary about the surgical team.

The issue seems to be she was told before the op that they would be getting 6 month follow ups involving bronchoscopy to check if there was any narrowing. Crumlin are saying now the babies are doing well and they do not need this invasion while Ormond st apparently offer closer monitoring, according to the Mum. But is the €36k for the bronchospy x2 or does it cover other stuff, like all their check ups for the next x years?
(That was the situation I gleaned from Facebook anyway)
Edited to amend, I see it's for inserting a balloon to their airways according to the journal.