Written by Nikki on 12/6/24 @ 8:19pm PST:
How this medical crisis started and how it's going now has changed dramatically and my condition at present is deemed by both my neurologists and neurosurgeon to be life threatening. I have a lot to share on how we got "here"; so i'll be writing the latest update for the next several hours or so.
How this whole GoFundMe started and the original medical crisis that would later cause a 6mm brain lesion and focal cyst all in the vicinity of my brain stem:
From 2021:
Being born with a particularly nasty rare genetic condition and learning to thrive despite it has never been easy. Ehlers Danlos and it's co-occurring conditions progressively errode quality of life and during periods of aggressive disease progression can also lead to death.
Despite the incurable and debilitating nature of my disease I've always found a way to bounce back. For the longest time I felt I was winning this battle, whether it was surviving meningitis in 2003, going in remission from ovarian cancer in 2010, recovering from multiple surgeries gone awry due to excessive bleeding, regaining mobility after 6 months in a wheelchair from a spontaneous disc tear to surviving Daph's childhood diseases-all which I contracted with Hand, Foot & Mouth disease hospitalizing me twice as it progressed to encephalitis on both occasions. In my 43 years I've amassed many EDS survival stories but this present health crisis I'm facing is unlike anything I've ever experienced and without surgery I will lose this battle.
Some background on Ehlers Danlos; EDS represents a group of inherited connective tissue diseases that range in disease expression, intensity and often associated with hypermobile joints. The version I was born with is one of the more severe, impacting my life on a daily basis and require I be closely followed by my doctors. This became a challenge during the Covid pandemic opening an opportunity for the disease to aggressively progress in a frankly terrifying direction with my own immune system triggering a cascade of new and severe complications. Starting after my Dad's death from Covid in May 2020, my condition quickly went from being managed to completely out of control. In less than two years time I developed new and major cardiovascular, neurological and nervous system complications. Disorders related to my joints, immune system and blood that were controlled for years started to aggressively progress causing a rapid deterioration of my health.
Not even the newly developed hypertrophy in my heart, daily episodes of tachycardia or new blood perfusion issues affecting my anterior temporal lobe of the brain which lead to multiple TIA (mini-stroke) events, vision changes, tremors and other nastiness were nearly as frightening as when my own immune system started attacking my joints, teeth, bones and causing an excruciating level of pain I had never experienced. My body was literally crumbling from the inside and medications that once kept the disease progression in check ceased working all together. It was at this time I developed an infection in my lower right alveolar bone which quickly became systemic and led to a sepsis scare last Thursday 3/23 sending me to Hoag ER.
Despite best efforts, countless hours on the phone and 9 in person doctor consults over 7 months whom all eventually whom all concluded my case was either too complicated, beyond their scope or worse, dismissive. All while, my condition continued to decompensate and the hope I had held on too so strongly starting to fade. Then came the 3/23 sepsis scare that landed me at Hoag Irvine and under the care of Dr. Shelley Dolkas. After taking my patient history, learning of my challenge in getting treatment while and seeing first hand how quickly I was deteriorating she left my hospital room determined to get me the treatment I so desperately needed. After multiple phone calls, including to UCLA (Dr.Dolkas also got stuck in the never ending message center hell, experiencing the same frustration) she personally reached out to Dr. Steven Michaelis whom agreed to bring me in for a consult the following day. To describe Dr. Dolkas as an Angel would be an understatement.
I fought back tears during my entire visit with Dr.Michaelis as the despair I was resisting was being replaced by a new sense of hope. Not only was he empathetic, he was angry that over the past 7 months and despite 9 in person doctor consults, at no point was a treatment plan ever created nor did any provider attempt to at least slow the disease progression down. After literally calling the situation BS he and his office team took on the task getting me an appointment with UCLA. Although they got stuck in message center hell too I have faith they're going to come through.
As this surgery is incredibly invasive with multiple follow up surgeries required, including reconstruction, I'm already aware insurance will not cover my treatment in its entirety. As a single parent and having lost all immediate family to death in the past two years along with being forced into medical leave from both my professions as a CISO/Sr. Cyber Security SME & Clinical Neuroscientist, this is one crisis I can't get through alone. All funds raised will be used toward uncovered medical expenses (and there's a lot ) along with the recovery period and especially to support Daph and Havok through this fight for my life. Daphne and Havok need their Mom, I also still have a lot of good left to do in this world and can't wait to get back in the Cyber Security trenches and resume my research as a Clinical Neuroscience.
Your generosity will have a greater impact well beyond in saving my life but will be paid forward for many years to come to bring hope and healing to others.
There are no words to express the depth of our appreciation...sincerely, Nikki, Daphne & Havok.