DHK - Alexander Ulloa, 9, Diamond-Blackfan anemia (DBA – a rare bone marrow failure syndrome), Medford, with his parents Alex and Maria 8-16-17

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

Alexander was diagnosed with Diamond-Blackfan anemia (DBA), an extremely rare bone marrow failure syndrome, shortly after birth. With DBA, the body’s bone marrow does not produce enough red blood cells, resulting in extreme anemia in the affected person. Alexander’s mother Maria also has DBA and the condition is genetic, so doctors knew to test him after birth. Alexander has been receiving care from Dana-Farber and Boston Children’s ever since he was born. Alexander receives monthly blood transfusions in the Jimmy Fund Clinic. His condition is considered chronic, so his treatment is ongoing. Alexander’s parents chose Dana-Farber for his treatment due to the renowned reputation of Dana-Farber and Boston Children’s, especially for their treatment of pediatric hematology/blood disorders. They say that Dana-Farber/Boston Children’s is the best possible place Alexander can be – words can’t express what the fantastic staff means to their family. Alexander attends St. Joseph’s school in Medford and enjoys watching Boston sports teams, skateboarding, movies and videogames.

00:06:33

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

Well let's welcome in Alexander you Lola might sing it right Alexander. Yes all right I'm like one for twelve so far during this thing I Alexander's nine years old. He's from Medford. He's here with his eyes mom and dad Alex and Marie. And and you were diagnosed with something called diamond black fan Anemia. DBA I'm going to be honest with. I've never heard before you know what it means. And let's. And the example that I thought 300 anybody I need you to make it a battle for me now here's the other thing. As as I understand it Maria it's genetic and you also got the same situation right. And did you guys have an idea it. This might be Alexander's played as well as he went for. And you know we was looking out for it plane he was born we hope it wasn't the case but he knew what was it just. Alexander is is a cool cat I can just go back into our cool and I wanna get a couple things out here we gotta just got to establish some things. One and you're in a video games right. Are gonna video games give a video games. Come to the best video game out there right now. Racking Clinton why. It's about race native came. Out. With a robot like on. Yeah. Michael it's not out of our backs are I'm learning here learn something you get. It's cool guns oh. Dean. You. Each. And the whole lot this is one making slight NL east of his own. I'll while Michael you know I had. A bomb. Outs. I like the planet them go to different planet that a lot I know you're in a movie she was the best movies. So best movie I can watch right now. Mean what's the last good movie watching a hum man mom and dad and we gotta you gotta get better so or or I I need to go see this movie. That's one. Me. Alia. The book that became a movie movies that came up look at the pretty club in eighteen. Thanking him and are okay. So that others learn a few I don't know if it again. This is he he's been the door partnership we got a lot of reflect while the video game with a record of movies the school sports teams in the Red Sox. There's a fair player. My theory EM sorry I don't know if you will still be big. Poppy to curriculars court. I got a book for injuries he. And I detective but I know you guys came off vacation come under radio which is pretty that's pretty cool in itself on the radio battle back from vacation. But we're gonna get your information and sensitive development side where. I'm a path to get Stanford aren't don't worry about it. Alex and Maria how I was he'd been through all this power houses spear family look he's obviously a lot of energy right now but but how is it bad. He's pretty singing it and we go to the gym meet a clinic in me really do a great job of making sure that the kids. Don't dread coming may even though they've gone medical treatment so supportive. And everybody from you know the administrators to the volunteers and nurses and you couldn't ask for in a better support system. I'm gonna ask Alex not Alexandra this question because I learned early there's a difference Alex how does all of this disrupt family life. It pretty profound and significant ways. But we we have a lot of support a lot of that comes from afar. And it is a lot of that comes from from our neighbors as well and from really from the city. You know it's one of those things where there. To donate blood growing up as you know right at it off and on without really understanding the profundity it until Alex and it was pointed brilliant to let that Maria. So every TV every drop of blood that is donated it. That he gets his transfusions. Gift. It's like for. Blood in terms of how it's it's. Affected gently fits. It's a stronger. It interest weighs in in certain ways that don't always necessarily reveal themselves are off the bat. But it overall I would say that we are strong innings struck. Tuesday and in ways to witness directorate for example what was one of those ways words made stronger and you wouldn't even get that question went through. With something as elemental as sitting sitting in the room. Sitting in the Jimmy Fund clinic and watching him go. Through that go through the procedure and sometimes. I personally I have a tendency to maybe think too much. And to so but over the years. You learn through technology and whatnot that you can. Sort of calmed down Austria breathing. And then so those are lessons that I can impart to my son. And what I see those lessons manifest in him to be you know it's part of growth. Alexander how to explain. To hear your friends. You know you're here this is what have I do they ask you questions that they do that question. Yeah I outcome like I get blood pitching against is eight picking up probably sixteen theory. Like that became you know I panicked and shine a given month. In some changing instant way as a freshman trying to get stuck in place. And it's hard to do attack will. This ad and I am pleased that Easter weekend. Half half and I had. An idea where to live by Alexander hello my dad Alex and Maria thank you guys very much for them and it's great to meet all of you thank you Alexander netbook and you and amp a expect you to read write with your Arctic poppy. The picture would enter your address. And we love to get its current. Site thank you thanks for coming in.
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