Jana Shafagoj

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Our son, our third child, was born in the fall of 2014. He was a big boy, weighing just over 9lbs. Due to his size, the nurses checked his glucose and realized something was wrong. They kept a close eye and at 20 hours of age he went into a crisis and was taken to NICU. Everyone assured us that these big babies just sometimes have trouble stabilizing. After four days, he was discharged and we thought we were in the clear. A few days later, we got the call; something was on his NBS and we had to get him to the ER at Children’s. A specialist was waiting for us.

That was our introduction to the world of mito disorders. Our son has VLCAD, a fatty oxidation disorder. Despite numerous hospitalizations over the years, our sweet boy is thriving. We are overwhelmingly grateful to those who were here before us, to the doctors and scientists who are working to improve treatments, and to the medical teams who do so much to keep him healthy and happy.