In partnership with WUD Film's Reel Love Fest and the LGBT Campus Center's Out and About Month, WUD Music brings you OUTFEST, a weekend of programming in Union South that celebrates the LGBT community and all of its awesomeness. Friday April 24th: Brooklyn-based and openly gay rapper Le1f is taking the Sett stage by storm, with a unique voice to his bars, twerk-inducing production, and the moves of a college Dance major.
Joella the Brave and her Chiari Fight and path to Brain Surgery
Joella, our crystal fairy child sent to us from the Goddesses....was misdiagnosed with Autism Spectrum Disorder & Asbergers Syndrome for several months beginning in late summer of 2013. Treatment plans were being made, the pediatric psychologist urged us to commit to an aggressive approach so as of October we were preparing to take Joella out of school so she could receive 32 hours of in-home behavioral therapy per week. We all felt uneasy and not at peace with the plan so Mama Minta scheduled an appointment with a pediatric neurologist in who ordered Joella's first MRI and the Chiari was discovered in November 2013.
Chiari Malformation is a serious neurological disorder where the bottom part of the brain, the cerebellum, descends out of the skull and crowds the spinal cord, putting pressure on both the brain and spine and causing many symptoms. There is NO “cure” for Chiari.
March 25, 2014 Joella was scheduled for a Chiari Decompression. After 2 appeals to the insurance company, they are demanding we find a second Neurologist to backup the treatment plan from our UW Childrens Hospital Pediatric Neuro Surgeon. March 28 we meet with a specialist at Milwaukee's Childrens Hospital. A Chiari decompression is a specific type of craniotomy designed to make more room for the herniated cerebellum, and to relieve pressure on the brain. It also may permit restoration of the normal flow of cerebrospinal fluid (CSF) round the brain and sometimes results in an improvement in any associated hydrocephalus, hydromyelia, or syringmyelia.
The surgery takes about 2 to 3 hours and recovery in the hospital usually lasts 2 to 4 days. After surgery, it's common to have headaches and neck pain from the incision that may last several weeks. Recovery varies from 4 to 6 weeks, depending on your general health. Joella will be out of school during her recovery time for at least three weeks.
Our Insurance has DENIED coverage for Joella's surgery. We are currently in the process of appealing the denial. The average cost of a Chiari Decompression is $100,000.
We are asking for donations to help us pay for Joella's treatment as well as to help her Mama's make ends meet while our world is flipped upside down. Any amount is infinitely appreciated. We are so lucky to have such strength and support from all of you.
Much love and gratitude.
Mama Minta & Baba Lizzy
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