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What's the story with Lily Mae?
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20-12-2012 1:39am#1no 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 xmas5
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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
Her parents and her uncle know a lot of people in Irish music scene or know people who know people. I think they just mobilised the troops and were successful. Sadly its not an option for every sick child, there is a 7 year old in Galway with the same condition and facing the same odds and she is pretty much unknown. I think it's just a case of who you know and how much you're willing to do to put yourself out there. Other families probably don't have the resources or aren't emotionally or practically able to rally themselves into a national awareness and fund raising campaign. Hopefully they'll be successful but you'd like to think fund raising of this magnitude might benefit more than one child.0 -
_Whimsical_ wrote: »Her parents and her uncle know a lot of people in Irish music scene or know people who know people. I think they just mobilised the troops and were successful. Sadly its not an option for every sick child, there is a 7 year old in Galway with the same condition and facing the same odds and she is pretty much unknown. I think it's just a case of who you know and how much you're willing to do to put yourself out there. Other families probably don't have the resources or aren't emotionally or practically able to rally themselves into a national awareness and fund raising campaign. Hopefully they'll be successful but you'd like to think fund raising of this magnitude might benefit more than one child.[/]
Fundraising is also for world research of her type of cancer which is absolutely magnificent. The 7 year old in Galway has been exposed a lot more due to this as well as the other kids in Ireland. It's a fantastic charity and everyone should applaud that people are helping out.
Anyways it's trying to become Xmas No.1 and we have until midnight to do it. So fork out 99cents on iTunes and it will genuinely give more exposure and research to this horrible childhood cancer0 -
_Whimsical_ wrote: »It's a fantastic charity and everyone should applaud that people are helping out.
Agreed. The project is primarily down to the work of a man called Stephen Macken, who as I understand, is a family friend. While there's an element of the family knowing and being known to some artists, Stephen Macken took the small idea of making a record, by the scruff of the neck, and it has snowballed into something that has become huge.
It didn't become huge by some Irish artists just agreeing to participate, it became huge as a result of the enormous amount of work put in by Stephen Macken and his team in terms of planning, arranging, recording, marketing, promoting, selling.
It's people like Stephen Macken, who had the drive to tackle a project that he believes in, head on and making it work, that will get this country back on its feet.
I've heard some of the begrudgery in relation to why it's only Lily Mae, or why it hasn't been done for others - I would argue that as a result of this, the level of awareness about the illness has been increased innumerably and only good can come out of that, and as d-gal said, some of the proceeds will go to global research of this specific illness.
It's 99c to support it - it's 99c that I've spent, and I hope several others do. This is something to be applauded, not something to be knocked.
Richie0 -
What threebeards said, pretty much...
It's a hell of an achievement, to get this single made in the first place, get it to number 1 (possibly even Christmas number 1, which would be amazing) - ...
I think quite apart from raising money - which the family will need, no doubt, if Lily-Mae relapses and needs treatment abroad (in Ireland, if you relapse with Neuroblastoma, it's palliative Chemo... but there are fairly successful trials in Europe and the States...which the parents will have to pay for themselves... what would you do, if it was your child?)
- if she doesn't relapse, (and let's hope she won't!!) all the money raised now is going to Neuroblastoma research, which is desperately underfunded. Some money from the single is going to Neuroblastoma research at present, too.
I'd never heard of Neuroblastoma before Lily-Mae got it. And I'm sure a lot of other people would be the same... so quite apart from raising money, the song has raised a TON of awareness, and that can only be a good thing.0 -
threebeards wrote: »It didn't become huge by some Irish artists just agreeing to participate, it became huge as a result of the enormous amount of work put in by Stephen Macken and his team in terms of planning, arranging, recording, marketing, promoting, selling.
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.0 -
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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.
What are you raving about now?0 -
It is also thanks to over 200 singers that were part of the choir. Stephen has done a hell of a load of work in getting all those people from musical societies nationwide. This song might not have been as big as it was without these people and their family and friends.
They have been selling in their home towns, schools and driving a tweeting swarm on twitter. By them spreading the world all over Ireland and beyond it has reached pronominal levels. That would not have happened on the might of the famous singers alone.
I happen to number in amongst these people and we couldn't be more proud to be a part this. Even though I have done my fair share of spreading the word, I have done nothing in compared to others.
If it wasn't for the tragedy of this little girl getting sick then none of this would have happened. She is so strong and the rest of the family so brave that they are truly an inspiration to us all.
Even though we sang primarily for Lily Mae. We all know that we are helping other little children and their families. Lily Mae and family are just the spokes group for all the other families.
The fund raising won't stop with the single. We have plans for next year that will raise so much money that we can give to research even IF Lily Mae has to go to America.
It has been surreal experience being a part of this. Why not help us and buy the song today. The LAST day that your sale will count towards the Christmas #1.
Thank you for your support.
Cinders87 (Clare Mc)0 -
It is also thanks to over 200 singers that were part of the choir.
You're absolutely right Clare, it was wrong of me not to mention the individual singers and members of choirs and musical societies that gave up a weekend to get involved. You have every right to be proud of what you were involved in. Apologies for not giving you and everyone else who sang/played the recognition in my previous post that you absolutely deserve.0 -
She`s 7 years old how would pictures of her now prove troublesome when applying for a job? If she manages to overcome this illness I`d imagine it can be only be a plus ,but doubt it would come in to it, when applying for a job.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.0 -
It's a contingency plan in case of relapse. They're hanging on to the money in case of that. How long do they wait with the money before donating it to Neuroblastoma Ireland? When Lily Mae is 21???
What about the 140 other kids on St Johns Ward who need help NOW? St Johns ward is €4million short of the funds needed to finish its new ward. The kids on this ward are being treated in third world conditions. I think people should donate to that, to help kids in need NOW, rather than contribute to a contingency plan for one child.
Here's a couple of links that, I think, are interesting reading.
http://m.irishtimes.com/newspaper/ireland/2012/1218/1224327959947.html
http://www.cmrf.org/appeal/show/200 -
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Ed Winchester wrote: »It's a contingency plan in case of relapse. They're hanging on to the money in case of that. How long do they wait with the money before donating it to Neuroblastoma Ireland? When Lily Mae is 21???
What about the 140 other kids on St Johns Ward who need help NOW? St Johns ward is €4million short of the funds needed to finish its new ward. The kids on this ward are being treated in third world conditions. I think people should donate to that, to help kids in need NOW, rather than contribute to a contingency plan for one child.
Here's a couple of links that, I think, are interesting reading.
http://m.irishtimes.com/newspaper/ireland/2012/1218/1224327959947.html
http://www.cmrf.org/appeal/show/20
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?!!0 -
Couldn't have put it better (and cleaner) myself d-gal. We would love to raise money for everything, but a person can only focus on one thing at a time.
To answer the question, no we will not have to keep the funds in reserve until she is 21. A year at the most. However any funds we raise above the max needed for America would go into research before that time. We'll at least that's what I'm assuming. Paul doesn't strike me as the type to hold onto funds that will NOT be needed to send Lily Mae to america.
Cinders0 -
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?!!
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.0 -
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?0 -
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.0 -
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'. Pathetic0 -
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 IMO0 -
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.0 -
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 !!!!!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.0 -
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 Xmas0 -
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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:).0 -
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.0
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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.0 -
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 Xmas0 -
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.0 -
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.0 -
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.
Cinders0 -
_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.0 -
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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.0
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