Yoilish & Sruli Fried: Inside the Fight for Pediatric Heart Patients!

Truly freed, Sholom Aleichem. >> Shalom Aleichem long time no speak. >> Truly freed is the owner of High Lifeline in Lakewood and in Philadelphia. I would yes, is that what you do for that I eat and I want. I'm ready to a poor minute. The title of it If you want to hear me from you but even if I have to do the challenge. I would be having to do the entire thing because we're talking about a mild entertaining you. >> I get the smack on the camel the English This is a fine again. It's a pleasure to be talking in English today with all the day. We spoke and we had we had and we did the same thing and we did the same thing again. Is it the same thing again but in the same thing again in Lakewood and Philadelphia and the same thing again that we deal with in High Lifeline Lakewood is chop. This is Children's Hospital of Philadelphia the same thing again and the same thing again that we deal with in the world. And we still do this in the same thing again in the tri-state area and we still do the same thing again in New York and Philadelphia. The same thing again that we still do the same thing again in patient on an average talk. We still do the same thing again in the world and we still do the same thing again in the world and we still do the same thing again in the world and we still do the same thing again in the world and we still do the same thing again in the world and we still do the same thing again in the world and we still do the same thing again in the world and we still do the same thing again in the world and we still do the same thing again in the world and we still do the same thing again in the world and we still do the same thing again in the world and we still do the same thing again in the world and we still do the same thing again in the world and we still do the same thing again in the world and we still do the same thing again in the world and we still do the same thing again in the world and we still do the same thing again in the world and we still do the in the world and we still do the same thing again in the world and we still do the same thing again in the world and we still do the same thing again in the world and we still do the same thing level thing. And was Was my younger kid disease over this kid when he walks around in the in the Zimmer locked off locked over the locked over the Zimmer. The amount of nurses in the aquarium Michael Hostage can I say she's like an attraction in chop. The cancer cardiac floor the CICU in chop vice for me because um they die from a heart transplant. It's a climate was that for a heart transplant. And the process And to to ask me to get a little more detail thing I give this is that then. Yeah, so this might have daf a heart transplant and season chop yet for a good douche. Yet to begin our transplant up in a row going over the over a list. Right? And it's the whole entire system in in in the potato of the season is not controlled by the potato list and controlled by OPTN, where this is the organ transplant organization with some government guidelines. And we got to go over the over the list and we can't come and chase with the heckler of the list. Are they are they going to a bunch of details very became first fire at sight. Yeah. And a kid or an adult or the vents of ice elder dimension so then so then so then was I not this little sack need to get off the list. So it's the whole entire design in the tower lockers of the weight heckler of the list of the weight niche. The heck status of the list is status 1A highest. Status 1A and this is the best option for a kid so kind of becoming a heart transplant. So I status 1A. Yes. Begins not home in in the more days with the accumulates. Would the host a status 1A oilish? Then daughter's day you go higher and higher up the list. Then daughter's day you do a sack better chance for this kid to home a heart transplant. I would have this kid is not in the potato. Is the laws right now that the the the the whole lockers from the list is you lose your status 1A. Can't stop becoming status 1A and take then this in the potato. Mr. And so much good luck. It went the hell is going well when this in the potato. But I miss this in the potato. This is not the whole entire mile. You're not going to accumulate status day for 1A. This kid is a campus a look with me going by a bunch more. Is this kingdom? A heart. Hand. Morning. This is this kingdom say you say niche because you didn't have a heart. Obel, the kingdom is on the ship at all. This kingdom is not on the ship at all. Okay, a kingdom is not a matter. Was on the hind leg of the sister can I go into school? The top of the mom is on camera and the other kid. Obel. We bought the law is in the rules from the list is. As. We can't stop the king taking kind of heckler of the list in the status one a list of business patrol. Well, the top of the mom and I wish to hang them in this kingdom ship at all. That's for staying your English. We ends the master do is. This is a king was with a pool production today home that the time of film the field as he never give kind of film niche also have not trying to kind of freaking can't transplant. I'm a board of the sham board of the sham with grace. With grace with grace of the shamayan is she available is she eligible now to be king of transplant? Obel this kingdom is not on the hind leg of the kingdom is on the ship at all was everyone is for leading take from the status one a. It was kingdom came to the army came down to this kingdom say man this kingdom wind it was on the hind It will go into school. It will go into the house and then This kingdom is not the player do is this the English when I say that Is he is he more than is this the English? Very critical while you miss out home my heart of the city to do take like a sack was in the top team for the ship at all yet. >> Wow. >> This is the rest of the kingdom and chop of the tank in the weather in the neck of the machine and in business on the chop this kingdom is not on the chop. >> Kid was in and in the nick he was in an off machine and in Mizzan and Chap. This kid Mizzan and Chap. is they will home take to cannon home the highest status to zone in the front of the list of the next a heart smack to available. because there's a bureaucratic rule in this system just cuz he's in Charlotte So the next that kid the whole world knows needs a new heart to live. And he looks the only way she can get days on the list is if she stays in a hospital a few hours away from home. It doesn't make sense. Go to school. and in a minute to change with with with with with the heart and a heart will become available. transplant for her to be in the hospital now outside of the need to accumulate days so may take to zone status 1A. >> Well, >> It's just not fair. And you know what, you have to get them the total of some of the top doctors in shop. Top administrators in the hospital that I reached out to and they say you're right. But we don't govern, we don't create these rules. We can't override it. These are rules that came down from OPTN that the only way to accumulate to be getting made cake on the status 1A list and to put you higher on the transplant um receivable list is if you're in the hospital. So mama taught her I'm going to get discharged. I can just have a good stay. I want to go Waiting for a heart. So I can just go to go to school. This is lawyer Emman. This is This is a bureaucratic rule. This is the best way to create a system was as as the sickest kid should get the transplants first cuz if you're in the hospital, you're the sickest. But that's not the case here. Everybody agrees she's so sick that she needs a transplant. But she doesn't need hospitalization cuz there's nothing to do in the hospital for her except give her a new heart. It doesn't make sense. The whole thing just doesn't make sense. >> What happened now? Something came up now different than before. >> Look, this is a family. This is a mishpacha. We was sending What advocates they are. And they know the system. It's a sophisticated They did everything. This is not a family that that creates drama. They create chaos. They make a petition. They did everything. They went through the regular channels, the systems. They met with doctors. They met with everybody and tried getting an exception, right? So, they exhausted every option. And the bottom line is the answer that came to them the answer was came for Alicia is we can't change OPTN rules. >> Is that a government rule or the laws >> This is the organization, the organ transplant organization, that's governed I don't know if it's the Department of Health or whatever it is. This is complicated, right? And that's the answer that comes down meaning from the local level, from the hospital. I could tell you I you have to talk to me. I could have the job. Let me tell you nothing changed. So, the difference that can happen here is your wish that we can create and make political pressure. This is the only avenue now. It's not something that it can steam at the toy them on the local level in the hospital. The list halacha of that the only way the kids got to have to go up on list of status in status one A is by holding taking a spit tool mizahn an exception that as a kid who is in a vada kid who is in need of a chronic and living year and long with their heart challenge. About it they're not in the hospital they shouldn't go higher on the list. But if a kid is this sick that a few months ago they didn't even she didn't even qualify for a heart transplant. As they come to the hospital they didn't think that they they said she can't even get one, right? So if a doctor says that she is so sick that she should be on there and she's really status 1A but she doesn't need to be in the hospital. Let her accumulate the days on the list at home. >> So how >> That's what we're asking for. You know listen it's it's simple. It's simple and clear. It's clear. >> I assume the Zuma seemed right politician. >> Not the right politician. From a petition for people to take a few minutes out of your time and advise you to just go to the link and then you're going to send it out as we and we get him to the thousand dimension to say please change this rule on the OPTN. >> [clears throat] >> Is transplant petition at gmail. Transplant t r a n s p l a n t petition p e t i t i o n at gmail. So I'm going to stick with that simple shoot me an email with a vote survey whatever the the petition is a chicken with the exact information with me thing. Other machine over the the link with the link and the spirit of the line. So this is how that was filmed out in the middle of mentions to do is do a chance to my English being granted push the way to the forward is a nice gift you to send them a balance. Straight to my guys we sitting all the stuff is one of the things kids want and was elected to see I'm going to do this again. As in they're not doing anything to her. She's not surgery when do There's nothing happening with a vote. But there aren't many opportunities in life. To cannon MS muscles on and they fish out the missile. To cannon MS making a difference of literally saving a child's life. Your signature your action can get a heart. So that Klein kid, and time is of the essence. Time is of the essence. Everyone should go on Y is a guy and ask for the petition. And the kind of rotten that rotten and my chef is help. The easy second was a Yidden shop. I like English. I like English. And you have to as That's the shop. So I can The email is transplant petition@gmail. Website for Davis can open my calendar and online. If you have schwerer Messiah get engaged marker topics This is a schmuck to you and I can see you. Remind your English It's called for the opportunity in a light to be Shabbos. You know those are no schmucks enough simple kiss in the future. I mean that. Thank you. I have a schmuck.