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'Every Day Is Like A Year For Him': Race Is On To Find Cure For Toddler's Rare Disease

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Race for the cure for JT Borofka

Updated: 3:34 PM MDT Oct 27, 2020

'Every day is like a year for him': Race is on to find cure for toddler's rare disease

Race for the cure for JT Borofka

Updated: 3:34 PM MDT Oct 27, 2020

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Race for the cure for JT Borofka

Updated: 3:34 PM MDT Oct 27, 2020

'Every day is like a year for him': Race is on to find cure for toddler's rare disease

Race for the cure for JT Borofka

Updated: 3:34 PM MDT Oct 27, 2020

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the doctors gave him to five years, and they said it was gonna be very tough on us, so it was gonna be horrible. When J. T. Baraka was first diagnosed at the age of about six months, it was hard to grasp what was going toe happen. Here you have this baby happy and healthy to the eye. How could you imagine that something so precious and normal isn't going to stay that way forever? I'm Tara Baraka. I'm J. T. Baraka's mommy on I'm Jason Baraka, J. J T. Baraka's dad E. And this is J. T. We're off. Good. Rare is extremely rare. You can't even say it's one in a million thing. It's a one in 500 million. It's so rare that there is only a So far as we know, there's just a little over 60 cases ever reported in the history of medical science. Right now, I think he's one of five in the US is deficient in T. P I. And everybody has t p on their body to survive. It's basically have process sugar in the body, and his two guys levels are extremely low. It might not sound like a big deal when your body can't break down sugars. But when one function of your body is not able to do something, it affects everything else for him, it comes down to his his muscles being weak because he can't process food. His lungs and his diaphragm completely stopped working because this disease can affect so many body parts just from not being able to break down sugar. When J. T. Was first born, he was a normal, happy, healthy baby to the I you couldn't tell anything. He was a bundle of joy. Ah, little chubby, happy, bouncy baby. We were seeing his pediatrician to two months check up, and she noticed he was kind of pale. She did a test and noticed his hemoglobin level was extremely low and it was dangerous. So we need to go to Stanford Hospital. We went up two days later and we're waiting for test results from the blood test that Stanford took when they came upon the computer. And she was like, Oh my God, he needs a blood transfusion immediately. And next thing you know, we're in the hospital. They were scrambling to figure out what's wrong with him. I remember there was, ah, counselor with us with him, and I just knew right there something was wrong. And he basically said J T has 2 to 5 years to live and there's no cure. There's nothing we can dio. It was about a stuff, as you can imagine when they tell you your kid has 2 to 5 years and that he looks perfectly normal and you know he's normal. They're telling you he's in the normal up until this one point, and then all of a sudden he's gonna be paralyzed and breathing through a tube and won't build a move that's like the scariest thing in the world. And then that's exactly what happened. G Right after his first birthday, he got a really extremely bad stomach virus, and from that day on, everything went downhill. That stomach virus, it just knocked him on his little diaper butt. And the next thing you know is dire friends not working. And he's like running a marathon every day because if you're Dia friends, not moving your breathing with just your lungs, and it was a lot of work for him, seeing him plugged into all of these wires, and these monitors. It made things more riel, and it made it mawr Skerry. I can't imagine what Jason and Tara we're going through during that time. 2662 miles. That is exactly how far the Baraka family traveled from Salinas, California, to right here at the University of Pittsburgh in Oakland. And they did it because what's happening inside of the walls here of biomedical science? Tower number three is the Onley shot they have at life for their 11 month old son, J T. Now we have hope. Um, Dr Michael Palladino and his team and the University of Pittsburgh, they're gonna find some answers for us, and that gives us Ah, lot hope, a lot of hope. My Palladino is the only researchers studying to be an entire world, and we're just very blessed that he's in the US We felt so good, like a relief knowing that somebody kind of had answers. No, a very molecular level. What's wrong? And we know what kinds of drugs should work. So we have some direction in our research. Is this all a lot of hope that we can get there and not just get there for T P I deficiency. Get there in time for J. T. We've always wanted to cure this disease, but meeting a patient, especially when this young and adorable it's really quite motivated. So there are a lot of challenges funding being one of them. There's no no foundations for this particular disease. With so few patients in this country, all this work needs to be done. Privately, it's hard to find pharmaceutical companies to partner with, which is often how some of the safety studies and toxicity studies are often paid for is through partnerships with pharmaceutical companies. I think it's important to let people know about rare disease research. Educate the community as to how a complicated kids are dying. It's not just this disease, but hundreds of other diseases that air too rare for drug company to get involved. They're just never going to be a profit margin in treatment for a disease that has so few patients one ever send. The money is going to J T. And we are funding lab in Pittsburgh, and that's what we're sending all the money, and that's gonna ultimately find the cure to save our son first fundraiser was that Angelina's pizzeria? It was a pizza place fundraiser. We had May 4th. We have donations and all set up. We're expecting some people to show up, but we didn't know the amount of people that were going to show up to this. And we're expecting hopefully to make $5000. I think we end up with, like 30,000. Had 1200 to 1500 people showed up at that pizza place. It has been completely unbelievable. How many people have stepped up for our kids. I mean, I can't believe it like it's It's in the thousands of people saying they're gonna throw fundraisers. All of us, I mean everywhere, like it was insane. We're on a rolls coming out of the wintertime, ready for our spring events and fundraising for J. T. And then Covic showed up and it was just unbelievable. Everything just shut down. I remember canceling is the big golf tournament. We had four. Um, we had everything like it's like it was just amazing and it was gonna be a big fundraiser for the lab. The day that really hit us was when I was afraid to call the lab, but um, they called us and basically they told us that there's no one working in there right now and there's nothing. And at that point we realized that the hope was just also ripped away from us. They were working with about 20 staff members in the lab, and once the pandemic hit in March, they had to scale completely back to about three people, and that really limited their research. So in mid May, thankfully, they were able to open back up to about 50% of their staff. So they are working their dedicated towards this. We can't get those months back that we lost. We found ourselves in the hospital realizing that he was gonna have to be breathing through a tube and eating through a tube. And you wanna build a talk? He did get to say, Mom, but I never got to really hear him say Dad. And that was it. No, he's just how he is now. And every day is like a year for him. He needs help now. When the pandemic hit, it was very isolating And forge 82nd birthday. They had a drive by birthday parade. We showed up and we were early, so there wasn't a lot of people there. But by the time the parade started and there were cars driving by honking their horns with signs bringing buy gifts, it was a fun day. J T did fabulous, and I mean our local community there to support in the kstw news to follow him and share his birthday with everybody. You felt lucky to be ableto have him and let people see him. So many family members had not seen him for months. It was so fun. And it was the biggest reminder of Wow, the community loves J T. Nobody has forgotten about J. T. This family is so loved and cared for by this community. For Jason and Tara, I believe it's a sign of hope. It's a sign of love, and it's a sign of diligence that they have to their son and their commitment. They have to J. T. I love my wife and I know she loves me, and I know you know nothing's gonna happen between us. We're gonna be there for each other. We always had that before, JT. We've been together forever. We have a lot of friends that were really close and they'll do anything for us and they're always there and they're not afraid to give us a call even in the toughest times and support us. And then there's J. T s so cute, just like Hansel, they only he's having a tough time. You could snap back around and smile and laugh or something. Use our strength because that's going every day because he reminds us that we have to be strong and we have Thio get through this. Families are always gonna have challenges going up and down and dealing with a sick child is probably the hardest thing you will ever have to dio. I've gotten to know Jason and Tara very well and I feel for them this is, ah, painful, painful disease. And there are always very gracious that my lab working on this gives them a glimmer of hope, and that means a lot to me. But in the end, I know the sheer amount of work and good fortune that must happen in order for all the stars to align, to find a treatment in time and all I can promise them, which I have is that we're going to continue to work as hard as we can every day and where, confident that we know enough about this disease, that it it can be cured. It just takes time and all we can do is work as hard as we can every day. J. T. Baraka is a rock star he's been through so much since the age of just six months. Kids his age are learning to walk, to play, to speak, and he's been in and out of hospitals. The love that exuberance from the Baraka family is truly incredible. Just watching them as a family just work is a unit and stay so positive during this time. They're just such loving people, and I really admire them, and I'm so grateful that I get to be part of their life in a really unique way. J T is, ah, bubble of light, the family. They just have this energy of love and positivity during a dark time, and it's really inspiring

'Every day is like a year for him': Race is on to find cure for toddler's rare disease

Race for the cure for JT Borofka

Updated: 3:34 PM MDT Oct 27, 2020

When JT Borofka was born, he was a seemingly happy and healthy baby boy. But when his parents took him to the doctor for his two-month checkup, they learned devastating news about their son that would change all of their lives forever.JT was diagnosed with triosephosphate isomerase deficiency, otherwise known as TPI deficiency. It's a disease that impacts the body's ability to process sugars in the body. JT's TPI levels are extremely low. The disease is so rare, it's estimated that less than 60 cases have ever been reported. Doctors told JT's parents, Tara and Jason, their son's life expectancy was between just two and five years."When they tell you your kid has two to five years, and he looks perfectly normal, and you know he’s gonna be normal, they’re telling you he’s going to be normal up until this one point, and then all of a sudden he’s gonna be paralyzed and breathing through a tube, and won’t be able to move, that’s like the scariest thing in the world," Jason Borofka said. Just after his first birthday, JT contracted a bad stomach virus. From then on, JT's condition had worsened, including the necessitation of a breathing tube. Because of the disease's rarity, there is only one lab in the world working to find a cure: Dr. Palladino, of the University of Pittsburgh and his team have developed a close relationship with the Borofka family. While the prognosis isn't good, Dr. Palladino has hope: "We know at a very molecular level what's wrong. We know what kinds of drugs should work. So we have some direction in our research. That gives us all a lot of hope that we can get there. Not just get there for TPI deficiency but get there in time for JT."Lack of funding is one of the largest obstacles in the way toward finding a cure, and because of the global pandemic, many of the fundraising efforts the Borofkas had planned for 2020 had to be canceled. And with an ever-ticking clock, as Jason Borofka describes it: "Every day is like a year for him. He needs help now."Watch more about this family and their fight to save their son in the featured video above. For more information on the Borofkas or to help JT in his fight, visit SaveJT.Com.

SALINAS, Calif. —

When JT Borofka was born, he was a seemingly happy and healthy baby boy. But when his parents took him to the doctor for his two-month checkup, they learned devastating news about their son that would change all of their lives forever.

JT was diagnosed with triosephosphate isomerase deficiency, otherwise known as TPI deficiency. It's a disease that impacts the body's ability to process sugars in the body. JT's TPI levels are extremely low.

The disease is so rare, it's estimated that less than 60 cases have ever been reported. Doctors told JT's parents, Tara and Jason, their son's life expectancy was between just two and five years.

"When they tell you your kid has two to five years, and he looks perfectly normal, and you know he’s gonna be normal, they’re telling you he’s going to be normal up until this one point, and then all of a sudden he’s gonna be paralyzed and breathing through a tube, and won’t be able to move, that’s like the scariest thing in the world," Jason Borofka said.

Just after his first birthday, JT contracted a bad stomach virus. From then on, JT's condition had worsened, including the necessitation of a breathing tube.

Because of the disease's rarity, there is only one lab in the world working to find a cure: Dr. Palladino, of the University of Pittsburgh and his team have developed a close relationship with the Borofka family. While the prognosis isn't good, Dr. Palladino has hope: "We know at a very molecular level what's wrong. We know what kinds of drugs should work. So we have some direction in our research. That gives us all a lot of hope that we can get there. Not just get there for TPI deficiency but get there in time for JT."

Lack of funding is one of the largest obstacles in the way toward finding a cure, and because of the global pandemic, many of the fundraising efforts the Borofkas had planned for 2020 had to be canceled. And with an ever-ticking clock, as Jason Borofka describes it: "Every day is like a year for him. He needs help now."

Watch more about this family and their fight to save their son in the featured video above.

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