I recently found out a girl I went to school with has this rare disorder as does 2 out of 4 of her children. I saw what you're doing and would like to submit a Christmas wish for my friend and her children. My friend has no income and money is incredible tight for them this year. She has four children.
My friend and her two middle children have been diagnosed with an incurable brain disorder called Arnold-Chiari Malformation. One of her daughter is scheduled to have brain surgery in 11/2013, to decompress the area where her spinal cord and her cerebellum meet. This is not a cure but may help relieve some of her pain.
An immediate need for the child scheduled for surgery this month are button down shirts and pajamas to wear in the weeks following her surgery when she will not be able to put a shirt over her head.
Bianca's Kids provided 9 button down shirts and 2 pairs of comfy button pajamas for one child along with great Christmas presents for ALL of the children for Christmas, 2013.