Chiari Angels and Warriors
Zona & Ryan
“Her BEST days consisted of sitting in a recliner and on her worse days – she was unable to get out of bed. She no longer could walk upstairs to her bedroom so her dad would carry her up. We finally brought a bed down into the living room; she began to put on weight from the medications and inactivity. Her doctors & even some family members lost patience with her, telling us, "...she must want to get better." As if she had a choice! My standard answer to all was really a question: "Why would an independent 22 year old want to stop living, not be able to sleep and become dependent? This is not a choice!" -Dori Coldwell
“My hope is that the medical community gain a better understanding of the pain and suffering endured everyday by those affected. My son was diagnosed with Chiari on May 12th 2013 and just three months later on August 11th shortly after his 20th birthday he suffered a seizure that rendered him brain dead. The pain he suffered was real. The seizures were real. My son did not have to die.”
- Zona Mcgee
After graduating high school, Ryan Mcgee spent his time working, playing guitar, and gaming online with his friends. He was a healthy, active, compassionate young man who advocated for donor awareness as his mother suffered a life-long hereditary kidney disorder and was on the wait list to receive a transplant.
He was excited about his future. One day he suffered a moderate headache, the headaches continued to worsen until he passed out in the bathroom one Mother's Day and was rushed to the hospital by his mother and sister.
At the Emergency Room, Ryan was diagnosed with Arnold Chiari Malformation and the doctors suggested brain decompression surgery. Ryan had never suffered this type of pain, and being of age, agreed to the surgery. He went in a healthy young man and came out brain damaged.
Over the course of the next few months, his condition declined and he was not given proper diagnostics or treatment by the hospital where his surgery was performed. This lack of treatment led to his death at 20 years of age.
In his death, he gave life to his mother when she received her son's kidney.
We will fight to keep Ryan's memory and spirit alive and to spread patient safety awareness in his honor.
Athena & Robyn
Athena Conder is a beautiful 22 month-old precious girl who is scheduled for decompression brain surgery Dec 2, 2016 (Update on her page)
Her story begins with her mother, Robyn, seeking help for some very disturbing symptoms. Athena will hold her head in pain, shake her hands out, tremble, and have episodes that appear to be some sort of seizure.
The pediatrician Robyn was taking Athena to summed her symptom up to “behavior” even though it is evident in videos and photographs that Athena is suffering from pain.
Upon Robyn's insistence, Athena was admitted to a hospital to undergo in-patient EEG brain studies.
No seizure activity was recorded, however, Athena sustained chemical burns when nurses doused her in chemicals to remove the glue that held the wires to her little head...
Kari Coldwell was 20 years old when she was in an auto accident and suffered a “whiplash” type injury. At first inspection, the doctors told her that she would be sore, but there would be no long term issues. Her mother was understandably relieved.
However, it was not long after that Kari began having strange neurological symptoms: migraine headaches; stabbing pain; numbness and tingling in her neck and head; and weird spasms in her ankles, wrists, & thighs.
The doctors said she was fine, so it made no sense!
The pain would awaken her every few hours, caused difficulty sleeping and endless nightmares. Three plus years post-accident, her balance problems forced her to use a cane, then a motorized chair.
Even though she suffered horribly, she always kept a positive outlook and smile on her face. After years of searching for answers, Chiari Malformation was finally diagnosed.
Kari went into her decompression hopeful that some of her symptoms may finally subside. She was looking forward to getting back to the life she dreamed of before the accident took everything away from her...
"You have to roar. You have to scream. You have to advocate for yourself until they listen. What you don't have to do is take their crap. I swear to every single one of you I will fight tooth and nail to make a change. Fight until all Chiarians have a chance at a better life, without being abused and mistreated. This isn't over.” -Robyn Conder