My wife, Brittany Lynn Harton, has always been the embodiment of the best a human can be. She puts the needs of her friends and family before her own. Even at times when she was down to her last penny, she gave it to someone in need so that they would not suffer. I am humbled every day to call her my wife. Britt has an invisible illness known as Ehlers-Danlos Syndrome (EDS) . EDS is an inherited connective tissue disorder that is caused by defects in a protein called collagen (the “glue” to our tissues), that affects multiple systems of the body, causing mildly loose joints to life-threatening complications. Through all of her trials and tribulations, she has maintained a positive attitude and a contagious smile on her face. She has faced more adversity than anyone I have ever met but continues to fight. However, as Britt’s symptoms continue to worsen, her will to fight and smile is fading.
In Brittany’s case, her spine is so unstable, it can no longer hold her head up. She is at great risk of dislocating her neck completely—a grave threat to her survival. Unfortunately, she cannot continue her fight alone and I have exhausted all my resources. She finally received the answers to her mysterious ailments during a phone call from her neurosurgeon last Friday evening (8/31). We were told Brittany needs a fusion from her skull to her seventh cervical vertebrae (C7) to immobilize her neck, and that her C7 and first thoracic vertebrae (T1) must be banded for added stability. This procedure is not a “fix”—it is the life-saving procedure she needs for any chance of normalcy.
We have insurance, but Brittany’s syndrome is so rare there are only a handful of neurosurgeons in the world that specialize in the condition. The specialist qualified to treat her and the neurosurgeon who can perform the surgery that will save her life do not accept insurance; we are working to be reimbursed, but that is not guaranteed. We are not sure exactly how much her treatments will cost in their entirety, because, in addition to the procedure that will take place in Washington, D.C. (six hours from our home in North Carolina), her year-long recovery will require multiple follow-ups and comprehensive aftercare. We have spent approximately $34,000 out-of-pocket before the surgery, so we are forever grateful for any help that comes our way. This is our last-ditch effort for a hail Mary and I humbly beg our friends, family, and community to help us give Britt a chance for a brighter future.
Below is a little more detail of what has happened and what is going to happen:
After struggling through life with many different ailments, easily broken bones, joint dislocations, chronic back pain, celiac disease, ADD, chronic fatigue syndrome, anxiety, depression, and so much more, Britt’s symptoms were getting worse every day. She had to leave her career as a hair stylist and makeup artist in 2016 because the pain she endured every day was excruciating, and she had begun experiencing paralysis in her hands and arms. Britt received a diagnosis in July 2016 that she suffered a connective tissue disorder called Ehlers Danlos Syndrome (EDS). The condition caused debilitating nerve compression against her brain and spinal cord. We had been told for so long that nothing was wrong with her, but we finally had an answer! We didn’t know what to do with this answer, because there were no EDS specialists around, so we treated her symptoms. Over the two years that followed, we traveled all over the East Coast looking to find her some relief. After thousands of miles and tens of thousands of dollars, though, we still didn’t have any solutions. Britt now experiences severe episodes of full body spasms and paralysis, her vision and hearing are failing, her memory is fading, and she is unable to think or speak clearly.
Four weeks ago, Britt was at the end of her rope and her positive outlook on life was at an all-time low. She was spending 12-16 hours a day in bed and the rest of it in her recliner. It was as if she was waiting to be removed from this earth, so she would not have the pain any longer. She had become a shell of the vibrant, extroverted woman I had fallen in love with just three years earlier. Still, in the hours where she was feeling a little better, she did her best to remain upbeat and continued to search for answers. I came home from work one day, and Britt informed me she had found an EDS specialist online that was a mere 80 miles away. Unfortunately, he had just retired the month before. She emailed him anyway; 48 hours later, he personally contacted her and wanted to see her within the next 72 hours. He came out of retirement to treat her and we spent two days with him later that week. He told us she had Cranio-cervical Instability (dislocation of the joints between the skull and the first cervical vertebra or C1-Atlas), causing Cervico-medullary Syndrome (all of the pathological symptoms that Britt is experiencing i.e. vertigo, slurred speech, etc.) possibly Atlantoaxial Instability (dislocation of joints located between the first cervical vertebra, C1-Atlas, and the second cervical vertebra, C2-Axis), and a severe case of Dysautonomia (dysfunction of the autonomic nervous system, which affects heart rate, body temperature, etc.). [LH1] We were also informed that she is lucky to be alive, due to the amount of laxity in her spine not being able to hold up her skull properly, and that she needs a life-saving spinal fusion if she is to have any chance of normalcy again. The only person he felt capable of performing this procedure is Dr. Fraser Henderson; one of the best EDS neurosurgeons in the world. We found out he had a two-to-four year waiting list, but we were seen less than a week later! We spent from 8/16 to 8/24 in the D.C. area getting Britt tests, scans, and going to consultations with Dr. Henderson. Her digital full-motion x-ray (DMX) allowed us to see all of Britt’s spinal instability; it was clear as day that all her pain and suffering was coming from her spine pushing on her brain and spinal cord. This was causing all the memory loss, vision and hearing loss, slurred speech, dizziness, paralysis, and debilitating migraines! Because Britt has been misdiagnosed for so long, we do not know if the damage is reversible. This past Friday (8/31), Dr. Henderson called to tell us he is going to do spinal fusion on her and to plan on staying in Washington, D.C. for at least three weeks. We will find out the exact date today or tomorrow, but he is going to perform a spinal fusion from Britt’s skull all the way down to C7, and then bind her C7 to her T1. This is a very complicated procedure (probably not the only one), with at least a year of recovery, and a lifetime of follow-ups.
As we know more, we will update everyone. We will be creating a Facebook page (Britt’s Battle for Better ) to help inform everyone of Britt’s recovery and of everything that got her to this point so that other people will know what to be on the lookout for, if they suspect them or someone else might have EDS. Thank you all for your support, kind words, and donations! Britt’s Battle for Better is a community effort, we cannot do it alone.