Roman was born a healthy baby with no health issues. He reached each milestone early and developed normally. Then just before his third birthday, completely out of the blue, he began shaking in his hands. We took him to the emergency room where they could find no explanation for his tremor. His condition worsened and by the weeks end he could no longer walk in a straight line, feed himself, or talk clearly.
The doctors were baffled. Then the headaches began. He began having severe debilitating headaches. We took him to Strong hospital in Rochester to meet with a team of neurologists. They finally diagnosed him as having a rare form of Cerebellar Ataxia. He was treated every month with IvIg and steroids, and the headaches improved but the shaking still persisted with minimal improvement. We continued his monthly IvIg treatments and rigorous physical therapy, but still his condition was somewhat of mystery. Many doctors disagreed on what was causing his illness. We tried many different doctors and hospitals even traveling to Boston and still found no real answers. He had blood taken several times and it always came back normal.
Then about six months into this nightmare he took a turn for the worse. He began having fevers and became very lethargic. His skin turned greenish. We took him into the hospital and it was then April 14th, 2014 that they diagnosed him as having High Risk B cell Acute Lymphoblastic Leukemia and explained that the ataxia was most likely to be a very unusual precursor to the leukemia. This was devastating, horrifying news! However, it was then that the healing began for Roman, and for our family.
After months of taking him from Doctor to Doctor and not receiving any real answers. After months of staying up all night researching and praying for an answer for why our perfectly healthy son was suddenly so ill. After months of knowing in our hearts that something was seriously wrong with our baby, but no one could tell us what it was…we finally had an answer. We had something to fight against! And we did! Roman started chemo therapy and continued IvIg therapy monthly. Within the first month his tremor was almost completely undetectable and his leukemia was in remission!! Today Roman is doing really great! He can walk, talk, write, run, jump and play just like every other 5-year-old boy! It is not easy for him… it is something he still works at every day. Some days are not easy, some days he is sick from the medicine, or bouncing off the walls from the steroids, or struggling to keep up with classmates and then I remember how far he has come and I am just so thankful… Roman is a fighter!