Please help Angie live again

Hi my name is Mike. My dearest friends are in great need. They have always been there for others in our community. Carla will give the shirt she doesn’t have to give off her back. Pat is now a retired Marshall and veteran who risked his life for his community. It’s time to help this family in anyway we can Their teenage daughter who is like a daughter to me and a sister to my girls has been sick for a long time. The bills are growing as her needs are not covered by insurance.

Angie was born with EDS (Ehlers Danlos Syndrome). She then developed many comorbidities over the years, such as pots, dysautonomia, gastroparesis, mast cell activation syndrome and the worst one, she has been dealing with CCI. (Craniocervical instability) Her symptoms were manageable until about three years ago.

That's when everything took a significant turn for the worse. She started randomly passing out, which escalated to small seizure-like activity, which turned into non-stop seizure-like activity (these are not Epileptic seizures). Still, no one knew what they were for almost three years! (She just found out it's her spinal cord and vagus nerve that is being compressed every time she turns her head) In September, she finally got her CCI diagnosis at Stanford Children's Hospital in California. Her neurosurgeon put her in an aspen cervical collar, and so many of her symptoms improved tremendously! She has not had a single "seizure-like episode" since being placed in the collar. The problem is it's just a temporary fix.

She has two options for treatment right now, as there is no cure for CCI, EDS, or any of the comorbidities she sufferers from.

Her two treatment options are prolotherapy with PRP (platelet-rich protein) injections. Dr. Williams in Atlanta, GA, can do this one way; this is a more conservative approach done (posterior) which is how she will start. (She's currently in GA getting these injections) If it doesn't work, the next step is to do a PICL type of injection procedure, but they do it anterior thru the roof of the mouth. If that doesn't work, then she's facing major surgery. These procedures are high risk because it's at the very top of the cervical spine (neck), where the brain stem is.

These injections and surgery are only done in a few states. (nothing is local) These are very rare conditions with very few doctors that can treat these conditions, and the injections are NOT covered by insurance. She just had to travel 5 hours away just for a specialized x-ray called a dmx that also wasn't covered by insurance at all.

Even if you can't give anything, please share this to get awareness out! So many other kids Angie has met on her journey are suffering, just like her. Your thoughts and prayers are greatly appreciated. Thanks so much.