Helping Keep Emmalyn Strong

Emmalyn (and her brother Colton) were diagnosed with a Chiari Malformation and Syringomyelia at a young age. Chiari Malformation is a condition where part of the brain slides down into the spinal canal and blocks the cerebrospinal fluid from flowing as it needs to cleanse/nourish the spinal cord. Syringomyelia is a cerebrospinal fluid filled cyst inside the spinal cord that form a blockage of fluid. We trusted their doctor and they were both had a decompression surgery to lift the brain and restore flow to the spinal canal. Colton was five and Emmalyn was three. Colton is twelve now and so far, his surgery appears to have been successful. Emmalyn wasn’t quite as lucky. Emmalyn had an underlying connective tissue problem and other underlying conditions that should have been addressed prior to being decompressed. Because they were not addressed before decompression and because her initial surgeon removed too much bone from her skull, the decompression failed and it has caused a snowball effect that has caused her a life of continued pain and thirty-three surgeries trying to stop the snowball and get her the life that she deserves. Right now, she has a known CSF Leak. We’ve had to make five trips to California to find out what was wrong and after three attempts to seal the leak by Epidural Blood Patch, they need to try a patch with fibrin glue in hopes of avoiding a more invasive surgery. With the leaks, she has a severe headache when upright and must lay down for relief, definitely a hard thing to do at ten years old. Emmalyn has fought these seven years at a chance for a pain free life. She’s stronger than I ever had to be and the bravest girl I know (I know I’m bias).