My name is Abby and I’m seven years old.
I have Chiari Malformation, a malformation of my brain. I was diagnosed with Macrocephaly M-CM (Macrocephaly-capillary malformation) and Hydrocephalus. Macrocephaly-capillary malformation (M-CM) syndrome causes rare body and head overgrowth as well as anomalies of the brain, limbs, skin and vascular system. Hydrocephalus is an accumulation of fluid in the brain.
I am a proud “Zipperhead,” after having three Arnold Chiari Decompression Surgeries. Zipperhead is a term coined by many Facebook followers in the Chiari community for those who have had numerous surgeries on the back of their heads, resembling zippers. Arnold Chiari relates to structural defects in the cerebellum (the part of the brain at the back of the skull which regulates muscle movement).
Thank you for your support of rare disease awareness like mine. You can find our group on Facebook at Zipperheads for Chiari.
Hope is definitely in my genes!