Chiari malformation awareness and support for our sweet Braylee!

Hello, my name is Kelsey. I have a 5 year old daughter named braylee, she’s smart, funny, kind and so outgoing. To look at her some days you’d see a normal kid. But that’s not the case for her. Some people know but most don’t that Braylee was diagnosed a year and a half ago with what’s called Chiari malformation type 1 at just the age of 4. She has went through several MRI’s, tests and has already had one Chiari malformation decompression surgery last July. We were hopeful she wasn’t going to need another one but knew it was a possibility. Over the last few months we have discovered that she has to have another Chiari malformation decompression surgery just a year and a half after her first one. The surgery is extensive and it’s been hard for our family to wrap our heads around this. If you don’t know, Chiari malformation is when the lower part of the cerebellum (the brains balance center) droops down through the skulls opening (foramen magnum) into the spinal canal, obstructing cerebral spinal fluid(csf) flow and causing pressure to build up. It can cause a lot of issues, Braylee’s symptoms have been pretty severe. It causes her to not have proper balance(falling a lot, her legs get tired), migraines, dizziness, trouble swallowing(she has trouble eating and sometimes chokes), among other things. Most people who have chiari have low symptoms and can manage, however that’s not the case for our girl. The most common hemorrhage is 5mm, anything more than that is considered severe, Braylee’s is at 21mm. I was skeptical on sharing her story because we are very private, however I decided to finally share in hopes that this will help raise awareness and get Braylee the support she needs for us to get through this for the second time! This has changed our life and hers in so many ways, We appreciate all of you and we need all of the prayers we can get!