Joella the Brave: A Brain Surgery Fund

Liz Tymus is organizing this fundraiser.

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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.

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. Joella 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.

Joella the Brave and her Chiari Malformation
FRIDAY MAY 16. BRAIN SURGERY SET..

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.

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. 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 Children's Hospital for a "Second Opinion" (technically Jo's third) in April. We had a wonderful experience with some beautifully kind folks who knew we were not thrilled by our adventure to meet them. The neurosurgeon in Milwaukee said exactly what our Neurosurgeon in Madison said...Joella needs the Surgery and our plan is well thought out and more than reasonable. He was calm, kind and deliberate with his words and spent a half an hour discussing Joella, Chiari's and the decompression procedure. It was good to hear yet another professional tell us we are on the right path.....doubts creep in when you are forced to jump through so many hoops. The reinforcement was good, we left in high spirits and spent the day at the Museum looking at the Bodies exhibit with Jo and the night at the water park in Pewaukee splashing around and forgetting our worries.

Jo was Brave as can be and allowed yet another human to poke and prod her for an evaluation. I will never be able to express how impressed with her I have been...her resolve, her ability to roll with the changes we have forced upon her, her sweet smile when she meets people I know she has no interest in meeting, her cool navigation of a world with an overloaded sensory system...the kid rocks.

THANK YOU everyone. Your support has been uplifting and soul soothing. We have paid off many of Joella's outstanding medical bills and are now awaiting to see what happens with the surgical date set for Friday May 16.