Heather vs Chiari Malformation

Mama of special needs teen needs your help!


Please help our dear friend and sister, Heather Bryant, travel to Columbus for an important doctor’s visit!


Heather was originally diagnosed with Chiari Malformation in late 2009 and had surgery on 9/24/2010. Before receiving the Chiari Malformation diagnoses, Heather had been diagnosis with Ehlers–Danlos Syndrome (EDS) in 2003, Multiple Sclerosis (MS), and Fibromyalgia in 2007.

Recently Heather had a check-up and has now found out that too much skull was removed in her Craniotomy surgery; causing the brain stem to be compressed and spinal fluid flow to be completely blocked. She has been given a new diagnoses as well; pannus formation, retroflexed odontoid, craniocervical instability, degenerative disc disease in neck, dysautonomia, basilar invagination, CSF leak, Superior Canal Dehiscense Syndrome, Tethered Cord, and L4-S1 herniated with compression. Along with all these new diagnoses, Heather, has been given strict restrictions. Everyday things that we take for granted such as sitting up for long periods of time, walking and driving she has been restricted to a few hours a day. Unfortunately, there are not many doctors in our immediate area that can handle the Chiari Malformation and EDS. Heather is scheduled to see Dr. Daniel Prevedello at Ohio State University in the next month.

Never heard of Chiari or EDS? There is a 99% chance that your doctor hasn't either! They are both on the rare list of medical conditions but are more prevalent than we know. This makes receiving the right care extremely difficult. This has led Heather to have to go far from home first to OSU (per insurance) then more than likely out of state for care.

A little more about Heather on a personal note she is a Waynesville graduate, Warrior Mama, Mother to her 13 year old special needs son, daughter, sister and friend, writer, photographer, baker and Parent Advocacy: helping parents of other special needs children.

Our goal is to raise funds to help Heather, as she is currently on disability and unfortunately insurance does not cover all the expenses needed to get to Columbus. Expenses for Columbus will include lodging, gas, food and co-pays for office visit, testing and medicine. This fund will, also, help in obtaining the proper walking canes, wheelchair and neck brace that Heather needs to wear 22 to 24 hours a day. This is just the first step; if Columbus is not successful she will need to go to North Carolina or New York where there are more experienced doctors.

We know times are tough for everyone, we made this page in hopes that everyone that can help will. Every penny helps, no amount is too small! We appreciate your time and generosity as we help our dear friend and sister. Please we ask that you pray and share her story over social media with your friends, family and co workers so that Heather can get the care that she needs to get back to being the loving mama warrior and so many others things she is!

Websites:

http://www.ninds.nih.gov/disorders/chiari/chiari.htm
http://www.csfinfo.org/
http://ehlers-danlossyndrome.org/
http:www.nationalmssociety.org
http://www.chiarinsc.com/
http://www.chiarigear.com/
http://bigbrainedzebra.com/