WEEI>On Demand>>OMF - Christopher Hohn, 2, MPS I Hurlers syndrome, with his parents Emily and Darren and brothers Jacob and Parker and Dr. Christine Duncan, pediatric oncologist, Dana-Farber

OMF - Christopher Hohn, 2, MPS I Hurlers syndrome, with his parents Emily and Darren and brothers Jacob and Parker and Dr. Christine Duncan, pediatric oncologist, Dana-Farber

Aug 29, 2016|

Christopher (Milford) was diagnosed with MPS1 Hurlers syndrome, a non-cancerous blood disorder that’s also treated at the Jimmy Fund Clinic, in October 2014 based on the results of genetic testing. He underwent weekly infusions and a stem cell transplant. He continues to go to Dana-Farber for follow up and monitoring. The family feels that Dr. Christine Duncan is attentive, kind, loves her patients and is always responsive to their needs and concerns. They selected Dana-Farber for treatment because Dr. Duncan made them feel safe. Family includes parents Emily and Darren and brothers, Parker, 14 and Jacob, 1. Dr. Christine Duncan is the associate clinical director of pediatric HSCT and an assistant professor at Harvard Medical School. Her clinical specialty is stem cell transplant for rare diseases and her research specialty is the late effects of transplant.

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

Our next guest guys is Christopher own two years of age for Mel for disparity here Emily. And Darren Brothers and Jacob Parker and also with a series doctor Christine Duncan pediatric oncologist. That Dan Farber Christa you wanna say hello to everybody out there. Cuts and hello. Yeah. Are you doing today rule if I wanted and he's doing good on good. All of your hat that's Red Sox aren't. Ultimately the only think yeah the money needs. On national commodity guy thing you've got to hand it. Asked doctor Christine dock connector and give us an idea of what we were dealing with here because this is a little bit different this is 88. Blood disorder correct. As a Christopher has Burleson and which is an inherited blood disorders so it's not cancer. But it's treated us in this in their arraignments are our most intense therapy to stem cell transplant. I'm earliest entrant. Really Syngenta is a disease or Pritzker was missing an enzyme that helps to break down the regular sugars in our body. I'm in because of that yet lots of build up or potentially build up of those sugar this year products in lots of tissue selling his brain in his liver. I'm his respiratory engine parts possibly higher. In so for children with this insurance is not treated. And that can be fatal disease can cause serious developmental regression. Really affect his life in life of his parents and family. I'm so mean that Christopher now my and it. Two and a half years ago or just that Latin right after he got the diagnosis of this extremely rare disease. And then went to stem cell transplants incredibly quickly say within a month of meeting Christmas getting one of our most intensive treatment costs. Sort doctor mom actually Emily. Take me through a reader we've heard all the stories of human cancer patients but. Blood disorder take me through how to with a story. So prison where was he is an idea if these so it took a salon and the pregnant went through but it genetic testing and hammered. And then he was born and everything was great get a little lump on his back which we view it and anything. We asked me like right out of it. And then. You know in the first year he had sinus infection sinus infection sinus infection and essentially what added that all those and that is building up and his body that's usually released. Snatch it actually. He adds value. He like he's just his body just trying to get rid of it against maverick and and so after seven rounds of antibiotics there and I like that they not like that's probably enough to harm him long term what's actually going on. So we want to in the NC and he can we do like the sinus infection more antibiotics. I was like now. We should try and kind of I between the scuba. Us like this trying to just figure out what the right thing to do it. And it's your appointment his head and grow significantly. Large. Which we didn't notice being with them every day earth kind of like you see it and look back at pictures mountains like how. But that's so. All that fluid again this is building care. Eight and just who geneticists at tufts actually. And I was kind of like that's ridiculous genetics. He's an idea maybe there's no way and it's an issue and as soon as wiwa. Everyone every doctor there was going to Italy and tested countless and you just you know they would only do that if something with fears there are so. That I think that on the eighth and October and not until the thirty offers the real again official diagnosis of parlors and I think we knew before and they think stories disease that is not story. And so we new appointment as well which is. That's let's error loading and I think and it made it capable for us here that this on the day that the doctors and that we were more prepared. Their reality is Christopher shouldn't be right. Right like if we hadn't had that attention at that particular doctor's appointment. We never you know. Doing them experience hath he's actually getting me that there preschool well there recently yes. And we we're gonna do so early is usually. I think these specializes rollers in Minnesota and her and I are sent to go there for them either twelve weeks we had to be there and we layered referred to doctor Duncan there and I well we'll just go meaner and and it wouldn't matter like this is where we didn't even think we aim often. It's there's like moment in your life where it. You. Human meet people and you know that Patrick and they are now. Locked out of her it and we knew that Hewitt David blight it and seeded. You know doctor how typical it is for you choose. When you hear news when you're the diagnosis. Expressed that to the parents especially was such a young child were sometimes there's a lot of unknowns that that go along with it. You know and keep it satin what do you think. Any diagnosis I think when you have a child weathered attacks or not. Walking into the general fund or walking into dean of Harvard incredibly difficult to and we appreciate that we know that is the case for families. One of the things that is hard for families with diseases like earlier syndrome. Is that a lot of times you'll never heard of it. And say you're walking into a place surrounded by children with cancer with the disease that you just learned the diagnosis days and moments before. An hour walking and that's incredibly difficult. I think you know our job is to be honest but to be optimistic. I'm in one of the things we do promise Stanley's is that we will do everything possible. To try to do first of all save their child's life. In and to make kids as. Not enjoyable but is it possibly can asserted as you know. How these can be for next spare bed for the whole family and we truly mean that. I think when they're very difficult things is you know Christopher is amazing now he was amazing men. Into you have to tell families that there is a very reasonable chance that their child to die of this treatment Yemeni just got this horrible. You know horrible diagnosis who. Indy in Christopher did very loudly he had lots of bumps along the way there are some really tough moment they think. But he's doing great now and that's what makes it all worth it knowing that we can get to this moment. And that we are able to get to this moment with Christopher is incredible. And we just I'm just learning that his speech in his language is now advanced where is he came. I'm too was not speaking at all. Instead of being developmentally behind and the progress he's made it's truly astounding was the next year or so for Christopher what does it was a future next couple years. Was soup found what treatment. You know it's expensive for our. It's a good question isn't asked him was injured you're asking you're asking me cameras from the medical science. He's not fat Coca his transplant. His cures him of many components of the disease there's still parts of the disease that we are dislikes us orthopedic issues. On the other things but as far as the developmental changes as far as the missed his life we've we've turned that. And tested among you guys are you guys are blessed you said it knows a good chance that Christopher wouldn't be with us it not Dana Farber and people Wear and all the advances that make. Come into your life and so congratulations. Due to to all of you it's a great it's a great story it's terrific story. I Christopher you're done you wanna go right everybody now. Yeah everybody thanks for coming in Colombia and I bloody hat you don't have to take that I don't keep them then. You bloody and plus I think.

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