Hi, My Name Is
High School Team:
When Noah was diagnosed with scoliosis ten years ago at age three, it confirmed his diagnosis of neurofibromatosis, a genetic disorder that can cause tumors--usually nonmalignant--to grow at nerve endings anywhere in the body. There is no cure and no treatment. However, regular MRIs show it has grown but in a “good” direction where there’s “room.” If it starts growing into his spinal cord, he’ll have surgery to debulk that section, or risk paralysis. Since his diagnosis, we’ve always adjusted to “the new normal” as Noah has gone through bracing and serial casting that failed to stop the rapid and frightening progression of his scoliosis and an experimental drug trial that failed to stop the growth of his tumor. At six, with all other options exhausted, Noah had two titanium rods implanted on either side of his spine to correct his severe scoliosis, to great success. All is going as well as we could hope with twice-a-year surgeries to lengthen the rods so that his spine can keep growing. In March he had his 13th rod expansion surgery. The treatment we had dreaded most turned out to be a godsend. With all he has to handle, Noah’s amazing spirit shines through. We hope his growing rods keep his spine straight until he’s ready for spinal fusion. We hope he doesn’t lose a lung. We hope his plexiform neurofibroma doesn’t become malignant. We hope it stops growing. We hope he never gives in to despair, that he never loses his sparkle. We hope for a cure.