Ivy Jane age 8- Chiari Malformation Syringomyelia

This is my friends daughter, Ivy Jane. Just looking at her she appears to be a healthy, but petite, 8 year old girl. Though she looks “ok” she is not. Just because you can’t see it doesn’t mean it isn’t there. She has a brain abnormality called Chiari Malformation 1.5 with Syringomyelia. Chiari Malformation Type I (CM-I), is by far the most common type of Chiari Malformation. It is where some of the brain tissue at the base of the skull (the cerebellar tonsils) crowd into the large skull base opening, called the foramen magnum, which is where the spinal cord attaches to the brain. Chiari Malformation Type 1.5 (what Ivy has) is an advanced form of CM-I that  is diagnosed when the entire cervicomedullary junction, and not just the cerebellum, protrudes below the skull. (Not all doctors and medical centers are familiar with this sub-category of Chiari and its treatment. (Dr. Greenfield is an expert!) With Chiari 1.5 you can have a myriad of symptoms including choking, sleep apnea/disturbances, extreme fatigue, pain in the head, arms, legs, neck, urine incontinence, and many many more.  Syringomyelia (sih-ring-go-my-E-lee-uh) is the development of a fluid-filled cyst (syrinx) within your spinal cord. Over time, the cyst may enlarge, damaging your spinal cord and causing pain, weakness and stiffness but the most frightening- paralysis. Ivy and her family travelled to NYC a month ago to meet an expert Chiari Doctor named Jeffrey Greenfield. He reviewed all six of Ivy’s MRI’s, tests, and scans. He took his time with them and answered every question they could think of. And finally, after years of consults, neurosurgeons, appointments in Boston, MRI’s, tests, they received the news that they had been waiting for- but didn’t want to hear. “Ivy needs brain surgery with a duraplasty. Her symptoms will continue to get worse. Surgery is inevitable.” I am asking for your help guys! Jess, Ryan, and Vivian will be traveling to NYC with Ivy over April vacation for Ivy’s surgery. She will be in ICU for a few days. Ryan will be returning home after the first week to get Ivy’s sister back to school. Jess is staying another week to be close to the hospital in case of any complications. Also, for a post op visit 7-10 days after Ivy is out of ICU. As you can imagine staying in Manhattan for 14 days will be so expensive for them. Between food, lodging, travel and loss of wages. I wanted to put this together to help them out. Every little bit helps! Even if you can’t donate monetarily- please pray for this family and share this story far and wide. Please help spread Chiari Malformation and Syringomyelia awareness