nav[aria-label="Primary Navigation"] { padding: 0; & ul { list-style: none; width: 100%; display: flex; flex-direction: row; justify-content: start; align-items: start; gap: 30px; padding: 0; & li { margin: 0; } & ul li { list-style: none; } } }

Child Item

What's the story with Lily Mae?

swiftman

no i haven't been living under a rock for the past few months but to be honest i never bother reading 'oh buy the cd' and 'look at late late show, she's on'.

ok she's sick, so are thousands of other kids in ireland. why did she get a cd made and elton john's song. is she famous or are her parents well known?

im not slagging anyone off or anything, just want better understanding. hope song makes it to number 1 for xmas

Find more posts tagged with

Quick Links

Comments

brokenbad

https://www.boards.ie/discussion/comment/123973360#Comment_123973360

Probably not reporting it out of respect to Lily Mae and her family

Hoboo

Not a peep out of RTE 🤷‍♂️ It’s horrific yet zero reporting.

Mars Bar

That is a tough read. Vile human being

Hoboo

……

Homelander

https://www.boards.ie/discussion/comment/123970203#Comment_123970203

That is her father.

sgthighway

https://www.boards.ie/discussion/comment/123969986#Comment_123969986

What is the connection to Lily Mae?

brokenbad

Shocking news…..

Co Galway ballet teacher jailed for child sexual abuse in Mayo - Long Read - Courts News Ireland

antoobrien

listenup wrote: »

you seriously think that her parents should consider her potential for employment 20 years from now over using images to help promote the single ????

She has a point - high profile campaigns such as this tend to be remembered for a long time. From there it depends on the type of person that is remembering the "facts" of the situation (which will be blurred over time) as well as their position.

Mrs OBumble wrote: »

But in an age when it's not even a good idea to take a photo of anyone's kid without written consent - and when some of parents won't even give that consent - the wide use of her picture, especially some of the in-hospital shots, makes me a bit uncomfortable.

MrsO'B I wouldn't be worried about the use of the pictures, as you said yourself her parents are pushing this and asking for publicity. It's be a very different thing if a charity started an appeal for funds using the pictures without her parents permission.

Seaneh

Moderatorship isn't a "job" they don't get paid (except for the coke and hookers that DeVore passes down when he's had his fill).

listenup

Mrs OBumble wrote: »

I'm just a regular poster on Galway City.

I am a moderator on Work and Jobs, where pretty much bog-standard advice would be "don't mention anything to do with sickness in your CV, even if you're fine now, it might put employers off, no one wants to hire a person with tendancy to sickness". If you think that's "retarded" please come over there to discuss it.

If you want to complain about my behaviour here, use the Report Post button.

If you want to complain about how I moderate W&J, Helpdesk forum is over here.

Back on topic:
This kid has a pretty distinctive name. In 20 years, people won't remember the details of why they recognize the name, they'll just vaguely associate it with cancer/sickness.

And if it was my kid, I have no idea whether I'd be splashing her picture everywhere in this situation or not. But I would think twice about it.

I bought the CD ... didn't say it would be going anywhere near a CD player though :-)

you seriously think that her parents should consider her potential for employment 20 years from now over using images to help promote the single ????
somebody please fire the person who gave this girl a moderator job

Mrs OBumble

listenup wrote: »

are you seriously a moderator ?you have just made the most retarded statement I have ever read on boards I think whoever gave you your powers should seriously reconsider their choice !!!!!

I'm just a regular poster on Galway City.

I am a moderator on Work and Jobs, where pretty much bog-standard advice would be "don't mention anything to do with sickness in your CV, even if you're fine now, it might put employers off, no one wants to hire a person with tendancy to sickness". If you think that's "retarded" please come over there to discuss it.

If you want to complain about my behaviour here, use the Report Post button.

If you want to complain about how I moderate W&J, Helpdesk forum is over here.

Back on topic:
This kid has a pretty distinctive name. In 20 years, people won't remember the details of why they recognize the name, they'll just vaguely associate it with cancer/sickness.

And if it was my kid, I have no idea whether I'd be splashing her picture everywhere in this situation or not. But I would think twice about it.

nocoverart wrote: »

Don't wanna see a child sick or anything but Wouldn't buy a CD for charity if the music is crap... and lets face it, the music is crap on these kind of things. Now where the fook is my Godspeed You! Black Emperors vinyl collection at?

I bought the CD ... didn't say it would be going anywhere near a CD player though :-)

nocoverart

Don't wanna see a child sick or anything but Wouldn't buy a CD for charity if the music is crap... and lets face it, the music is crap on these kind of things. Now where the fook is my Godspeed You! Black Emperors vinyl collection at?

Seaneh

Squeeonline wrote: »

Not taking any side in this debate, but this is only half true. http://www.revenue.ie/en/business/faqs-charities.html#section1

You can't register as a charity, but you can register as a charitable organisation for tax exemption and you get a CHY number. IMO it's the same thing. Certainly it's the only thing that's actually important. Having the CHY number gives credibility to something, even if it's something batsh1t insane like Youth Defence or a chugging business.

yeah but a CHY really doesn't mean anything, any non profit can get one, it just takes a while of processing. It's not hard, just time consuming. If I was running a campaign like Sunni-Mae, I wouldn't bother. They are fund raising for a set set period of time and will not exist as an organisation, ever. They have no need to structure themselves like that, it would just be wasted time.

If they do decide to carry on fundraising and raising awareness, they they might have a reason to bother jumping through hoops, but right now, it would be pointless and they'd have no real benefit from it...

Squeeonline

Seaneh wrote: »

There is no such thing as a registered charity in Ireland.

Not taking any side in this debate, but this is only half true. http://www.revenue.ie/en/business/faqs-charities.html#section1

You can't register as a charity, but you can register as a charitable organisation for tax exemption and you get a CHY number. IMO it's the same thing. Certainly it's the only thing that's actually important. Having the CHY number gives credibility to something, even if it's something batsh1t insane like Youth Defence or a chugging business.

Seaneh

Arnia wrote: »

This foundation has driven an amazing campaign which should be applauded. It however does not sit easy with me when the foundation is apparently not a registered charity

There is no such thing as a registered charity in Ireland.

twowheelsonly

_Whimsical_ wrote: »

I am so sorry for your trouble and very much hope your child makes a swift recovery.
I don't think you're being a grinch ,I agree with you. I can fully understand Lilly Maes parents wanting to do this for her but it is true that funds directed at one individual are all to often funds diverted from a wider encompassing cause. When that is sick children it seems a great pity, particularly when it's such a large fundraiser. While she is not in need of treatment in the US I would like to see the money allocated for that being spent to help more children and their families.
Yes it was a beautiful thing that so many people came together and shared of their love and their talent, equally I think that good will should extend outside of one person.

That may be true but I think that in this case it has been a 'stand-alone' effort that has generated money that probably wouldn't have been donated to cancer charities and won't affect other fund-raising efforts. It's been a case of "Will you buy this for a Euro.." and most people have.
Hopefully the knock on effect will be of massive benefit to St Johns Ward and all the other kids that use it's facilities. If nothing else then it has raised awareness. .

I have experience of Crumlin, though not of St Johns Ward. It really sounds to me that it's something that has to be brought to the public's attention in a big way. I, for one, wasn't aware of the huge problems that appear to be there and of the €8m plans that they have. I'm sure if the whole country was aware of this then the money would be raised in double quick time.

Cinders87

Arnia wrote: »

I think all our children are worthy of a no.1 anytime of the year not just for Christmas. Therefore I think that the Crumlin building fund is a much worthier cause.

Pick a song and in the new year maybe we could arrange something. I'll talk to the rest of the singers that sang for Lily Mae. I think your right and we are being blinded, with the shine of Tiny Dancer, as to the real state of the wing. I think it's a great cause and would do anything I can to help. Which for me isn't much as I have college commitments. I will however put you in touch with others who may have the time to organise some fund raising. I hope your child is getting better, no child should be sick at christmas. My thoughts and prayers are with you all.

Cinders

Arnia

d-gal wrote: »

There is certain treatments that will not be covered by the State or they may only cover a %.
I would strongly disagree that it's a failure of an entire nation, it's the States fault. They unfortunately piss away OUR money on stupid things when hospital standards should be priority.
Anyways that has nothing to do with 1 foundation (Sunni-Mae).
Stay positive and I hope your child make a speedy recovery and has a wonderful Xmas

Thank you for your well wishes, I still believe there are more people that could benefit from a campaign like that and as a nation we voted the politicians etc in and kept them there! Really I feel unless u sit in that room and are told by the specialist that your child's chances in life are this % or that then you can't defend or reiterate the facts of individual cases without knowing them just as I can't about any one else's. but I do feel compelled to say that our nations children will only ever attend St. John's ward for any type of cancer treatment wether rare, acute, aggressive, as its all life threatening and very frightening. It will make no difference no matter how much money a parent has, a child will only be treated in St. johns ward. I think all our children are worthy of a no.1 anytime of the year not just for Christmas. Therefore I think that the Crumlin building fund is a much worthier cause. I never ever thought this would happen to my child. I hope you never have to have a reason to enter those double doors of St. johns ward.
Happy Christmas.

Ed Winchester

d-gal wrote: »

It's a terrible situation you are in but personally if I was in your position I would just say well done on raising money for cancer. Money is going towards Neuroblastoma research which I'm sure parents next to you appreciate. At the end of it the foundation deserves absolutely zero criticism and I applaud everyone that has donated towards it.
I wish your child the very best possible recovery and a very Happy Xmas

Look, this will be my last word on it. You're not in my position, so you can't say what you would do in my position. If the money goes to Neuroblastoma research, then it will be fantastic. A phenomenal achievement and a cause as worthy as any I can think of.
But it is a massively grey area in this case. Very unclear. Assumptions in this instance, don't matter one iota. It is a huge amount of money being raised and I just think a bit more clarity on its end use would make a lot of people more supportive.
And finally, to say that the only remaining option in Ireland, in the event of a relapse, is palliative care, is simply untrue.

d-gal

Arnia wrote: »

This foundation has driven an amazing campaign which should be applauded. It however does not sit easy with me when the foundation is apparently not a registered charity and when lily mae's mum has stated publicly that she will keep the €750,000 target amount until her child has been given the all clear. how long is that for? If achieved It's a great achievement by a community to raise such funds for one girl but its a failure of an entire nation that our children are being treated at a centre of excellence that is in such a bad state of repair, its cramped, unhealthy, germ fest environment! As a parent of a child who is fighting cancer I have been reassured by my consultant that if my child needs more treatment that is unavailable in ireland they will source the best treatment suitable to the child and it will be funded by our state. I choose to put faith in our medical system and my child's life is in the hands of my consultant and their team. I have never been told an amount that my child's treatment has cost or will if my child needs to go abroad. I am aware that each cancer is individual and I don't have all the facts.

There is certain treatments that will not be covered by the State or they may only cover a %.
I would strongly disagree that it's a failure of an entire nation, it's the States fault. They unfortunately piss away OUR money on stupid things when hospital standards should be priority.
Anyways that has nothing to do with 1 foundation (Sunni-Mae).
Stay positive and I hope your child make a speedy recovery and has a wonderful Xmas

_Whimsical_

Ed Winchester wrote: »

I'm not giving out about a little girl, she's a wonderful child. I absolutely hope she has a full and complete recovery. I wish her nothing but the very very best.

Maybe I am pathetic and the grinch. And maybe i'm sticking my nose in. But as I write this, from St Johns Ward, looking at my child who has cancer, I feel I'm in a position to. I'm sitting a few feet from one of the other children who has Neuroblastoma, chatting with the parents, and believe me, I'm certainly not alone in my opinions on this topic.

Just to reiterate my point, all the children on the ward need funds urgently. Not just one. We all fundraise here, what we raise, we donate to the rebuilding of the ward.

I am so sorry for your trouble and very much hope your child makes a swift recovery.
I don't think you're being a grinch ,I agree with you. I can fully understand Lilly Maes parents wanting to do this for her but it is true that funds directed at one individual are all to often funds diverted from a wider encompassing cause. When that is sick children it seems a great pity, particularly when it's such a large fundraiser. While she is not in need of treatment in the US I would like to see the money allocated for that being spent to help more children and their families.
Yes it was a beautiful thing that so many people came together and shared of their love and their talent, equally I think that good will should extend outside of one person.

Arnia

This foundation has driven an amazing campaign which should be applauded. It however does not sit easy with me when the foundation is apparently not a registered charity and when lily mae's mum has stated publicly that she will keep the €750,000 target amount until her child has been given the all clear. how long is that for? If achieved It's a great achievement by a community to raise such funds for one girl but its a failure of an entire nation that our children are being treated at a centre of excellence that is in such a bad state of repair, its cramped, unhealthy, germ fest environment! As a parent of a child who is fighting cancer I have been reassured by my consultant that if my child needs more treatment that is unavailable in ireland they will source the best treatment suitable to the child and it will be funded by our state. I choose to put faith in our medical system and my child's life is in the hands of my consultant and their team. I have never been told an amount that my child's treatment has cost or will if my child needs to go abroad. I am aware that each cancer is individual and I don't have all the facts.

Cinders87

Ed Winchester wrote: »

Maybe I am pathetic and the grinch. And maybe i'm sticking my nose in. But as I write this, from St Johns Ward, looking at my child who has cancer, I feel I'm in a position to. I'm sitting a few feet from one of the other children who has Neuroblastoma, chatting with the parents, and believe me, I'm certainly not alone in my opinions on this topic.

Just to reiterate my point, all the children on the ward need funds urgently. Not just one. We all fundraise here, what we raise, we donate to the rebuilding of the ward.

You have every right to feel that way, and I am sorry for your troubles. Believe me when I say that if you were to do something like this I WOULD do just as much to help you. Yes the fund raising is important, but what we mainly want to do is spread the word about this horrible type of cancer. I know every cancer is horrible, and you are lucky if you of someone you love isn't affected with it. All we are trying to do is make sure this type of cancer is researched as well as the others.

I did answer one of your questions by the way. The money needed for America will be held until the threat of relapse has passed, which is about a year I think. Any money raised that exceeds that amount will go straight to the research fund, at least that's what I've been lead to believe.

If you arrange any fund raisers for the hospital please let me know. I'm sure I can spread the word and get others involved too. Maybe that can be the cause behind the next number 1 attempt:).

d-gal

Ed Winchester wrote: »

I'm not giving out about a little girl, she's a wonderful child. I absolutely hope she has a full and complete recovery. I wish her nothing but the very very best.

Maybe I am pathetic and the grinch. And maybe i'm sticking my nose in. But as I write this, from St Johns Ward, looking at my child who has cancer, I feel I'm in a position to. I'm sitting a few feet from one of the other children who has Neuroblastoma, chatting with the parents, and believe me, I'm certainly not alone in my opinions on this topic.

Just to reiterate my point, all the children on the ward need funds urgently. Not just one. We all fundraise here, what we raise, we donate to the rebuilding of the ward.

It's a terrible situation you are in but personally if I was in your position I would just say well done on raising money for cancer. Money is going towards Neuroblastoma research which I'm sure parents next to you appreciate. At the end of it the foundation deserves absolutely zero criticism and I applaud everyone that has donated towards it.
I wish your child the very best possible recovery and a very Happy Xmas

listenup

Mrs OBumble wrote: »

It's also due to the family being willing to make a lot of very emotionally appealing photos of their child publically available, along with public appearances etc.

I don't want to be begrudgerous, and yes I did shell out the E2 when approached by someone from Claregalway selling the CD.

But in an age when it's not even a good idea to take a photo of anyone's kid without written consent - and when some of parents won't even give that consent - the wide use of her picture, especially some of the in-hospital shots, makes me a bit uncomfortable.

If she makes it (and I sincerely hope that she, and any other sick child out there does) then there's going to be a certain image of her in people's minds which could prove troublesome later on when applying for jobs etc.

are you seriously a moderator ?you have just made the most retarded statement I have ever read on boards I think whoever gave you your powers should seriously reconsider their choice !!!!!

Ed Winchester

d-gal wrote: »

So I presume anyone that has a fundraiser for something, you stick your nose in and say there is 'more worthy causes'? As I said before, you could just say well done and fair play, rather than being like the Grinch and give out about a little girl and her 'rock stars'. Pathetic

I'm not giving out about a little girl, she's a wonderful child. I absolutely hope she has a full and complete recovery. I wish her nothing but the very very best.

Maybe I am pathetic and the grinch. And maybe i'm sticking my nose in. But as I write this, from St Johns Ward, looking at my child who has cancer, I feel I'm in a position to. I'm sitting a few feet from one of the other children who has Neuroblastoma, chatting with the parents, and believe me, I'm certainly not alone in my opinions on this topic.

Just to reiterate my point, all the children on the ward need funds urgently. Not just one. We all fundraise here, what we raise, we donate to the rebuilding of the ward.

d-gal

me bolly wrote: »

It amazes me even more that the likes of Bono , Enya ,Van Morrison etc could write a cheque that would rid the need to collect for these kids.
Loose change to them.

Which makes it even more amazing what the Sunni Mae trust has achieved. Don't know why you mentioned a few pop stars. Personally I'd mention Bertie Ahern with his fancy pension, would help out a lot of hospitals very easily! Bono does plenty IMO

d-gal

Ed Winchester wrote: »

I find it amazing that you didn't take notice of, or dispute a single point I made. Like I said, what about all the other children she shares the ward with? The ones who don't have a network of rock stars to help them out.
Lily Mae is extremely inspiring, every one of those kids are. They all need help. Not just one of them.

Also, there is a lack of clarity as to where these funds are going. It is not a registered charity, it's a trust. How long is the money held in contingency. How much do Neuroblastoma Ireland get, and when do they get it?

My point is, there are more worthy causes. And please don't reply with, more worthy than a 4 year old with cancer line, because you know what I mean. Children's cancer in Ireland is in dire need of funds. St. John's ward is the only children's cancer ward in the country, and its like the black hole of Calcutta in there.

So I presume anyone that has a fundraiser for something, you stick your nose in and say there is 'more worthy causes'? As I said before, you could just say well done and fair play, rather than being like the Grinch and give out about a little girl and her 'rock stars'. Pathetic

Means Of Escape

d-gal wrote: »

It simply amazes me at times when people pull together and do something great that there is always somebody moaning in the corner. Her parents and friends pulled together and have done something absolutely amazing and exposed a horrible childhood cancer that needs to be researched and made more aware of. They've worked their butts off and inspired 1000s around Ireland and Lily Mae has brought joy to so many around the world with her attitude of 'happy happy happy'. She's an extremely inspiring girl that I had the pleasure of meeting and I'm glad to give money to someone like her and the Sunni Mae foundation

Could you not just say well done rather than trying to bring down people donating money to a 4 year old with cancer?!!

It amazes me even more that the likes of Bono , Enya ,Van Morrison etc could write a cheque that would rid the need to collect for these kids.
Loose change to them.

inisboffin

Do you know what, if money is dripping from your pockets, you can donate it wherever you want.
If you're not dripping with money, why not go ahead and start *your own* fundraising initiative for whatever group you deem 'more worthy'. No one is stopping you.
It might be nice to at least aim for a world of plenty, rather than a world of begrudgery?