Aces High Bulletin Board

General Forums => The O' Club => Topic started by: ozrocker on May 26, 2013, 08:28:50 AM

Title: Petition that may save a 10 y.o girl's life
Post by: ozrocker on May 26, 2013, 08:28:50 AM
Please watch, share, sign petition to have this little girl's chances of living increased.
She has Cystic Fibrosis and without a Lung Transplant may only have a few weeks left.
She's being denied access to the Adult Registry ( must be 12), she's only 10.
Adult lungs are much more readily available than Pediatric.
Thanks



http://abclocal.go.com/wpvi/story?section=news/local&id=9116387

                                                                                                                                                        :cheers:Oz
Title: Re: Petition that may save a 10 y.o girl's life
Post by: Latrobe on May 26, 2013, 08:35:10 AM
Signed!  :salute :pray
Title: Re: Petition that may save a 10 y.o girl's life
Post by: RotBaron on May 26, 2013, 08:43:03 AM
signed
Title: Re: Petition that may save a 10 y.o girl's life
Post by: mbailey on May 26, 2013, 09:56:35 AM
Good to go  :aok
Title: Re: Petition that may save a 10 y.o girl's life
Post by: gyrene81 on May 26, 2013, 10:04:08 AM
signed...i hope it does the little girl some good.
Title: Re: Petition that may save a 10 y.o girl's life
Post by: homersipes on May 26, 2013, 10:09:01 AM
 :aok signed and shared on facebook
Title: Re: Petition that may save a 10 y.o girl's life
Post by: guncrasher on May 26, 2013, 07:16:19 PM
I pray for the girl it is sad.  but it only means that if she gets a transplant then another little boy or girl wont get one.  it's a sad circle of life.  if one gets a transplant it means somebody else didnt get one.

if you really want to help then become a donor transplant and urge all your family and friends to become one.  carry the card with you at all times and make sure you tell your family that you are a donor and that it is your intention, god forbid anything happens.



semp
Title: Re: Petition that may save a 10 y.o girl's life
Post by: ozrocker on May 26, 2013, 09:31:54 PM
I pray for the girl it is sad.  but it only means that if she gets a transplant then another little boy or girl wont get one.  it's a sad circle of life.  if one gets a transplant it means somebody else didnt get one.

if you really want to help then become a donor transplant and urge all your family and friends to become one.  carry the card with you at all times and make sure you tell your family that you are a donor and that it is your intention, god forbid anything happens.



semp
FYI, My entire Family are Donors. In NJ it's on your Drivers License. Why does anyone need to influx personal opinions about
who dies/doesn't die speculation. If you care to sign the Petition that's great, if not, move along.. Thanks to those who signed so far.

                                                                                                                              :salute Oz
Title: Re: Petition that may save a 10 y.o girl's life
Post by: guncrasher on May 26, 2013, 10:11:33 PM
just spreading the organ donor message.

semp
Title: Re: Petition that may save a 10 y.o girl's life
Post by: ToeTag on May 26, 2013, 10:45:05 PM
If I could give this kid mine I would..they do not deserve this or even know why...Prayers to yours and all.
Title: Re: Petition that may save a 10 y.o girl's life
Post by: RedBull1 on May 26, 2013, 11:09:01 PM
signed :salute
Title: Re: Petition that may save a 10 y.o girl's life
Post by: shotgunneeley on May 26, 2013, 11:31:56 PM
Is there a reason for the age limit? Maybe children under 12 can't handle the more developed lungs of an adult.
Title: Re: Petition that may save a 10 y.o girl's life
Post by: ozrocker on May 27, 2013, 09:00:21 AM
Is there a reason for the age limit? Maybe children under 12 can't handle the more developed lungs of an adult.
No, it's policy. It was stated in her story that an Adult Lung is a feasible option.

Thanks to all who have signed. I do not know the family. I just heard the story, heard about the Petition and
thought I would post for signatures.

 
P.S. Sorry Semp, didn't mean to come over harsh. Just that this story is a heart breaker, as there are many I'm sure.
I raised 3 Daughters and am blessed that they were all healthy and we never had to face anything like this Family is enduring.


                                                                                                                                            :cheers: Oz
Title: Re: Petition that may save a 10 y.o girl's life
Post by: Flench on May 27, 2013, 11:35:10 AM
I pray for the girl it is sad.  but it only means that if she gets a transplant then another little boy or girl wont get one.  it's a sad circle of life.  if one gets a transplant it means somebody else didnt get one.

if you really want to help then become a donor transplant and urge all your family and friends to become one.  carry the card with you at all times and make sure you tell your family that you are a donor and that it is your intention, god forbid anything happens.



semp
And I agree more people need to be organ donor and just to think my cousin shot and killed herself mothers day at 22 . She was not a donor and knowing I need a liver myself . Life is just to short .
I will do my part Oz .
Title: Re: Petition that may save a 10 y.o girl's life
Post by: rpm on May 27, 2013, 12:22:25 PM
This petition will do nothing other than make you feel better about yourself. But that's what it's all about.
Screw medical professionals that have years of experience and training in these matters. We've got a Facebook petition!(http://www.en.kolobok.us/smiles/artists/just_cuz/JC_shakehead.gif)
Title: Re: Petition that may save a 10 y.o girl's life
Post by: ozrocker on May 28, 2013, 05:15:57 AM
This petition will do nothing other than make you feel better about yourself. But that's what it's all about.
Screw medical professionals that have years of experience and training in these matters. We've got a Facebook petition!(http://www.en.kolobok.us/smiles/artists/just_cuz/JC_shakehead.gif)
Did you go the the Link on the News Station? Doubt it, because it's NOT a FB Petition, Geez :bhead
"Screw years of medical experience"? Where does this even come in? Where was this said or implied?
Once again, if you care to sign the Petition, which has NOTHING TO DO WITH FACEBOOK, then please do.
If not, pleases leave your inferences, speculations or whatever out.
It has nothing to do with "Feeling good about yourself".
If the Petition can help the little girl have a chance to change a Policy for a chance to live,
then I'll sign.
If I could donate a Lung to her, and she survived, then Yes, I would feel good.

Thanks again to all that signed.
If you don't care to sign, then please move along without rhetoric, speculation or negativity
                                                                                                                                                             :cheers: Oz
                                                                 
Title: Re: Petition that may save a 10 y.o girl's life
Post by: mbailey on June 05, 2013, 06:14:49 PM
Just read where the little girl has just been added to the transplant list!!!

Family filed suit stating the 12yrold law is discriminatory !!!

Prayers sent little one. Another hurdle jumped in a lifetime of hurdles.
Title: Re: Petition that may save a 10 y.o girl's life
Post by: rpm on June 05, 2013, 06:21:08 PM
Family filed suit stating the 12yrold law is discriminatory !!!
That's things get done. Petitions aren't, but they do make you feel better.
Title: Re: Petition that may save a 10 y.o girl's life
Post by: mbailey on June 05, 2013, 06:55:43 PM
Petitions most certainly make a difference. Sen Pat Toomey got involved on behalf of the family Im sure this was due in no small part after seeing where thousands of his constituents signed the petition, and a Judge (appointed by politicians) granted a restraining order.

I'm certain all the national news regarding this case was due in part to the petition these amazing parents started. I'd go into this in more length if I wasn't typing this on a darn iPhone.

Petitions put pressure on governments, corporations and others in positions of authority. They also make everyday people aware of important issues, making it more likely they will discuss them with friends, family, and neighbors.

The more people speak out—via online and real-life communities, social media and citizen journalism—the more an issue is noticed, and the less an issue can be ignored. Governments, corporations and societies are forced to listen and make changes.



Ill follow up with more when I can get to a proper keyboard
Title: Re: Petition that may save a 10 y.o girl's life
Post by: mechanic on June 05, 2013, 07:44:19 PM
I don't feel better about myself for signing it, I feel worse that this kid suffers while I live healthly and mature after 15 years of smoking.

I signed because it only takes a moment. I signed because it can't make things worse for her. I signed because I respect Oz. There is nothing else to it.
Title: Re: Petition that may save a 10 y.o girl's life
Post by: rpm on June 05, 2013, 08:33:13 PM
Honestly, I'm very happy for the girl and hope she will make a full recovery. I just get beaten down by the whole online petition to change "X". They don't work but everyone gets a warm & fuzzy out of participating. Sorry if I singled out Facebook, but it is overwhelmed with stuff like this.

Legal action? Yeah, that will get the ball rolling most riki-tik.
Title: Re: Petition that may save a 10 y.o girl's life
Post by: spammer on June 05, 2013, 10:07:30 PM
I'm sure the Doctors want to help her, I'd give her my lungs if I died, what's stopping her from getting the help she needs?

I'm stopping here... I could go on. This situation just breaks my heart. What a beautiful child that we choose to ignore.
Title: Re: Petition that may save a 10 y.o girl's life
Post by: Guppy35 on June 05, 2013, 11:20:39 PM
Understand that I'm saying this as the father of a 15 year old daughter who donated her heart, lungs, liver, kidneys, and all sorts of other bits to the point that at least 40 different people got some of her.

One person's miracle is a tragedy for someone else.  This little gal has gotten lots of press and her parents are doing everything they can to make her front and center, as is their job.  But keep in mind that every person out there waiting for a transplant is the center of the universe for some other family.  Being a 10 year old kid doesn't make her any more important than the 23 year old who got my daughter's heart or the 40 year old who got her lungs.

At a certain point there are never enough donors.  Making the best decisions with the highest chance for success has to be the priority, not an emotional response because this is a child.  Not every transplant takes.  The person who got my daughter's liver didn't make it.

I'm not sure why this story has gotten under my skin, other then I think it seems like someone wanting to jump the line because it's their kid.

And for what it's worth, while it's the right thing to do, there wasn't and hasn't been a second of any day in the last, almost eight years, where Christina's being a donor, has made us feel any better.  I wish we'd been given a chance to fight for her.

Christina Johnson-Donor
(http://i152.photobucket.com/albums/s199/guppy35/cathi/Christina_zps099dfe15.jpg)
Title: Re: Petition that may save a 10 y.o girl's life
Post by: rpm on June 06, 2013, 01:54:55 AM
<S> Guppy35

You stated it much more eloquently than I could. Your daughter's gift wasn't to made to make anyone feel better for giving. It was a hard thing to do and a very personal decision.
I have a step sister that donated her body to science after dying from cancer. Her hope was the research they could do would help find a cure. It was hard for most of the family to take but it made perfect sense to me knowing how she felt.
Title: Re: Petition that may save a 10 y.o girl's life
Post by: guncrasher on June 06, 2013, 03:04:03 AM
it looks like she already was on the waiting list for young children but parents wanted her to move up to the grown up ggroup as lung donation for children are les.

it sstill doesn't mean she's gonna get an adult lung as it  has to fit in her chest cavity.  then also it has to match.   there's lots of other children adults just as sick and not many organs available.

the lawsuit is opening a Pandora box as patients may be fighting for organs in court.

semp
Title: Re: Petition that may save a 10 y.o girl's life
Post by: Copprhed on June 06, 2013, 03:21:39 AM
Judges and non-medical people should NEVER be allowed to sway the medical transplant system for determining who receives a transplant. This system is designed by professionals whose job is to be neutral. They are in the profession to save lives, and are not there to feel sorry for a patient. It is horrible that this young child is suffering a debilitating and fatal disease, but there are hundreds or thousands out there just like her. What makes a judge, or any of us, more suitable to determine who gets a transplant? Steve Jobs robbed a candidate who was more suitable for a transplant, and he still died, meaning that someone who might have REALLY had a chance to live died, because he had money and fame.
Title: Re: Petition that may save a 10 y.o girl's life
Post by: Flench on June 06, 2013, 02:40:02 PM
I don't feel better about myself for signing it, I feel worse that this kid suffers while I live healthly and mature after 15 years of smoking.

I signed because it only takes a moment. I signed because it can't make things worse for her. I signed because I respect Oz. There is nothing else to it.
Same here but I smoked for 40 years .
Title: Re: Petition that may save a 10 y.o girl's life
Post by: mbailey on June 12, 2013, 03:07:02 PM
She got her new lungs today   :pray

http://www.chron.com/health/article/Pa-girl-who-took-on-organ-donor-rules-gets-lung-4595884.php

Prayers little one, for a speedy recovery, and a start to your new life.


More prayers to the donor that saved this little girls life.

Title: Re: Petition that may save a 10 y.o girl's life
Post by: Zacherof on June 12, 2013, 05:16:21 PM
I don't feel better about myself for signing it, I feel worse that this kid suffers while I live healthly and mature after 15 years of smoking.

I signed because it only takes a moment. I signed because it can't make things worse for her. I signed because I respect Oz. There is nothing else to it.
it's these kind of stories that make
me feel like an ahole. I drink and smoke heavily knowing fully well there are those in need of kidneys, livers, and
lungs. 
Title: Re: Petition that may save a 10 y.o girl's life
Post by: Guppy35 on June 12, 2013, 07:58:08 PM
I must confess there is something about this story that still rubs me the wrong way. 

To put this in perspective.

The man who got my daughters lungs had been on the waiting list for two years and four months.  at that time in August 2005 there were more then 3000 people on the waiting list for lungs.

One of the men who got one of Christina's kidneys had been on the waiting list for two years and eight months.  The other man who got her other kidney had been on the waiting list for two years.  at that point in 2005, 62,000 people were waiting for kidneys.

The young woman who got her heart had been waiting for almost two years.

The list goes on and on.

I hope this works and works for a long time because it's going to cause an even bigger uproar if she doesn't make it.  I don't like the fact that this became important because she became a news story.  Everyone who is in need of that kind of help should be a news story then.

I hope no one dies because they got bumped by this becoming national news.

And yeah I know I have a bias about this.



Title: Re: Petition that may save a 10 y.o girl's life
Post by: rpm on June 12, 2013, 10:43:34 PM
Guppy, I just want to thank your daughter for helping others live. That is a tough sacrifice to make so others can live.
Title: Re: Petition that may save a 10 y.o girl's life
Post by: mechanic on June 13, 2013, 11:07:00 PM
I must confess there is something about this story that still rubs me the wrong way. 

To put this in perspective.

The man who got my daughters lungs had been on the waiting list for two years and four months.  at that time in August 2005 there were more then 3000 people on the waiting list for lungs.

One of the men who got one of Christina's kidneys had been on the waiting list for two years and eight months.  The other man who got her other kidney had been on the waiting list for two years.  at that point in 2005, 62,000 people were waiting for kidneys.

The young woman who got her heart had been waiting for almost two years.

The list goes on and on.

I hope this works and works for a long time because it's going to cause an even bigger uproar if she doesn't make it.  I don't like the fact that this became important because she became a news story.  Everyone who is in need of that kind of help should be a news story then.

I hope no one dies because they got bumped by this becoming national news.

And yeah I know I have a bias about this.






I absolutely agree with everything you've said Dan. The positive light I can see shining over this story is that because it became a news story, things might change for thousands of other children who would not be allowed organs from the adult organ pool. There are also surely situations like this where the rules are broken to save a child that don't make it into the news.

Not everyone can be this lucky, but one child being this lucky, news story or not, is a triumph for humanity and also potentially a catalyst for change for the better.

I still find it incredible that we as a species can get along for the most part without killing each other. The world's number one predator developed the concept of 'friends' without any other reason than our desire to evolve. The fact that we can save one life is a miracle of evolution. The fact that we can bring relief and joy to one family like this is beyond the comprehension of mother nature who is a cruel and unforgiving mistress.

It's not fair on everyone. It is still a miracle of a situation in this random carbon based sludge-fest
Title: Re: Petition that may save a 10 y.o girl's life
Post by: ozrocker on June 14, 2013, 07:48:56 AM
Guppy, sorry for your loss. A parent should never have to go through anything like that.

The little girl has had successful Surgery.
The powers that be in the transplant group that make policy has changed the
procedure based on severity of the disease, to include kids on the Adult registry.
It's all supposedly going to be based on that (severity).

                                                                                                                                                   :cheers: Oz
Title: Re: Petition that may save a 10 y.o girl's life
Post by: Flench on June 14, 2013, 03:44:26 PM
I like to thank you too Guppy . So sorry for your loss .