DHK - Jerry Cookson, 12, Adrenoleukodystrophy (a rare brain disorder) Revere, with Dr. Christine Duncan, pediatric oncology, Dana-Farber 8-16-17

WEEI/NESN Jimmy Fund Radio-Telethon
Wednesday, August 16th

Jerry was diagnosed with adrenoleukodystrophy (ALD) in March 2017. ALD is a genetic brain disorder that most severely affects boys and men. Jerry learned he was a gene holder of the disease in 2012 and his older brother, Ricky, 13, also has ALD. Jerry's treatment has included a stem cell transplant. He continues to be monitored by the Jimmy Fund Clinic at Dana-Farber. Jerry will start school at Garfield Middle School in Revere this year. He enjoys playing video games, baseball, football, and swimming.  Jerry has a great sense of humor and is quite a jokester.

Dr. Duncan can speak to the challenges that children with cancer face and what Dana-Farber is doing to make cancer treatment more effective for more patients. 


Transcript - Not for consumer use. Robot overlords only. Will not be accurate.

And now we've got a couple of other. Young guests who were joining us here at the table as soon as we get the mall might be up here. This is Gerri we know which one is Jerry. Allen's Jerry OK because Rick he's over there right I wanna make sure I got them straight here. This is Jerry cuts and whose twelve Ricky your Howell T twelve and thirteen. And this story's going to be a a little bit part for you to believe because. Gerri we'll start with you your being treated for a rare brain disorder. That's the short version is a LT. Help me with both the long version it's at Oakland to extra. Because I that that and and that's that's bad enough. But Ricky you've got same thing yes. And you guys are both being treated for this at the same time. You wind up being treated at the same time he had transplant five years ago. And I just haven't changed about five months and how are you look at you look great atmosphere great view. And how do you guys have you guys supporting each other mean are you able to tell him some things he's gonna go through him and for Japanese government what would you would have thought. Liked. All I've been doing is. That. Like. He's asking you something I would say something like my honest opinion. You're you're you're honest with them on your brother and I were talking a lot of medical that today that this is that moved a little tip. You guys also play bad. That's when it knows better and I honestly honestly. I hope now. And it arts or what team hero. OK okay but you got an advantage particularly they're now we have the highest rate he's in the game across the board so you put patriot studio. It he. Does. He can't. Eat. Quickly art that I have scored huge out artist I'm right in the forties games in the in the twenties e.'s third. Article about it. And so group play ten times not to play it cannot be active. If your plate in times how many. How I got a. I don't know I competent. Nothing no trip out of there. I think it. It. I think you guys that are on got to watch got a rocket got the part McKay director enters. Now doctor Christine documents yours well what we're both of these. These two are amazing and I think we've seen so far it shows you the energy's beard of these police. In trends in medical side and played these ratios is really how fast science moves. In sewage mean look at just you fear any ideas as to set a very rare brain disease. That if you don't have a family history of it release you don't know from the time you're diagnosed. If you're not treated with the stem cell transplant or other therapy. You'll have progressive. Paralysis loss of function and most boys die within five to ten years. In so at the time that Richie was transplanted. Only treatment the only cure we had this analogy it stem cell transplant which meant that he got high dose chemotherapy. And a apple mail from another person. And then if we fast forward five years later. We now to something called gene therapy were able to take Jerry's cells correctly Jean. In so we see in a course of five years science moves really quickly. I think the interesting thing also about these guys is that. At Branch Rickey was diagnosed there's no family history knowing it was going on. Because Vicki had some changes in his functioning. His mom really advocates strongly to get him seen taking care of by physicians were able to diagnose this really quickly. And as part of that treatment we're able identified at cherry also had the same disease and it was. Yeah medical model here quickly doctor US. Ellis I think it's. That door. The entire Red Sox right now there but their picture taken and then don't you. Letterman. About it I don't know and I want to salute right outside the door you guys who write it if that's what I think you'd rather be right. And I don't blame their lineup for their team picture right there you could at least I thought that their daughter and I. What I will tell you usually it's kids in the in the picture doctor should they be happy at the epic. I I. A night when I saw them lining up putts at all well here in regular rather constantly they would rather be out there with the Atlanta they ran out there fast. That's the ultimate greatest doctor how unusual is it to have to voice in the same family battling the same issue. It's an Algerian registries extraordinarily rare diseases diagnosed in 140000. Boys. In so it is genetic doesn't inherited in each of the boys and once one of them was diagnosed we knew that there was 2550%. Chance that his brother be diagnosed as well. And it's mom's not here I have to say part of the amazing thing about just how strong definitely has been in support. Support from the community to trying goes through to stem cell transplant a short period time just really. On taxing on the family to the community and they've come through so beautifully and with their personalities and spirits fully intact it's really density in these two lots. Another phrase you used a few minutes ago science moved quickly. How'd it signed move quickly with just donations was it I was just constant. And I hate to say it isn't a trial and error to that cigarette and how to move so fast. Looks pretty amazing to ensure the people in the scientists in the lab who have north and gene therapy for years will roles arise if I say it as quickly. But in the clinical. Impact of the clinical impact has been remarkable so it's it's transplant that Mickey had. Push him at the need him need to have immune suppressing drugs Haider's therapy for many many months. In so within that time period through donations to support to the work of investigators think collaborations and I think we are very fortunate to have Dana Farber and Boston children's located in the center we're sitting we're surrounded by science and you're surrounded by people were working every day securities rare diseases. I'm DOD is rare requires a special community to focus on diseases that affect us on number of children. So it's then efforts of many many people out but once the started being able to move from one type of transplant completely different paradigm in five years. Is really something that we haven't seen that pace and science. I'm you know in my in my lifetime that I can think up. What's it like working way of kids that age you were twelve or thirteen year old tree were we younger as well and explain to them. Just how serious it is but how to find that balance of not scaring them if we had to do that in. These guys are hilarious and I think that they keep you honest as they said they're honest with each other name now if you cannot be straight with them. I'm so obviously it to strike a balance. You know not talking about just how. Difficult to treatments can be that you also a lot of treatment and am looking at junior came what did you tell me this has happened. It just recently thinking about cherry came through he sat in the room. With us the entire time we talked about the treatment he had the choice of the standard. Stem cell transplant gene therapy he was able to save acting like on line vs the other. They're really special boys that so our most of the kids that we take care and I think you just have to several with their jokes answer preteen and teenage boys and I. And her I. And colorful humorous an unpopular and just generally. Enjoy it. Well doctor Christine Duncan thank you for being such a good sport as I was watching the monitor over your shoulder and I just such aryan Ricky. Standing right in the middle of that Red Sox and only after a smiling from ear here so I think we made the right call and leasing them from this thank you burning analysis and test.