Jen's Story

Jen Enjoying Life BEFORE the Mold
Jen Before the Mold
Enjoying the Hudson Valley Weeks BEFORE the Mold

just weeks after the Mold

Keeping spirits up Superhero Style
Jen & her Little Buddy Post Mold

One of Jen's First Infusions of Many
After losing her Little Buddy, Jen has been blessed with a caring and uplifting heart!  Meet Kai
Kai bringing smiles and joy as a Baby Ewok!

Showing our love to the FDNY on a beautiful day

Kai on duty
Dream Come True Thanks to my Mold Warriors!

Did someone say Toothless???

Before moving to New York State to teach and coach soccer in late August 2010, and after coaching both soccer and strength & conditioning at the collegiate level,  I had the opportunity to give back to my home and college communities through becoming an Instructor for the American Red Cross, teaching, coaching soccer and strength & conditioning, volunteering with Athletes Helping Athletes, Special Olympics, Wet Nose Rescue, and using whatever vehicles accessible to help students and student athletes alike decide who they wanted to be, what kind of impact they wanted to make, and the most positive path to achieving their goals.  Not only was I able to apply, improve upon and add to what I had learned, but I was able to enjoy all that the Hudson Valley had to offer.  

All of that began to change in the early winter months of 2010-2011 when I was unknowingly exposed to and became infected with invasive levels of toxic mold.  While struggling to maintain my positive drive, as those early days became increasingly challenging, I found it harder to just make it through my day between the onset of intensifying respiratory issues and vestibular dysfunction symptoms.

As the weeks went by, so did the intensification and exacerbation of my symptoms.  By February and into spring, I was now experiencing muscle spasticity, muscle weakness, dyskinesia, intermittent paralysis, increased fatigue and blackouts after mild physical exertion along with general increased fatigue, cognitive dysfunction, headaches, dizziness, inability to concentrate, frequent trips to the doctor and stays at the hospital.  By April, I had to begin borrowing from our district’s sick bank to attend a two week rehab where I relearned how to walk and was actually jogging 10 days in to it, all the while ensuring my students did not skip a beat in the classroom and maintaining my positive drive.

But three days after my return to New York, the bulk of the symptoms returned more than full force and five days back I began to experience a new symptom: full body tremors.  After following up with my physicians upon return from the latest hospitalization, it was suggested I see an autoimmune specialist who in turn referred me to Infectious Disease.  The integrative medicine specialist I sought out in the end of April, early May, happened to have vast experience and immediately diagnosed me with invasive toxic mold exposure.  Due to the level of toxins in my body, I was told to abandon everything I owned that had been exposed and seek a mold free environment, which I did that very day.  I began a strong course of anti-fungal medication and immune building supplementation and changed my already healthy dietary intake.  I was able to finish out the school year, thanks in no small part to the great people with whom I had the privilege of working, without getting worse and finally began to experience some improvement.

Unfortunately, federal funding cuts struck the District and I was one of several teachers and staff who lost their jobs.  While working hard to regain health, searching for a new job and helping the student athletes I could, albeit in a limited capacity, I remained positive as the summer came to an end. 

However, in September 2011, I experienced a severe relapse which intensified the neurological symptoms brought about by the toxic mold exposure.  In addition to no salary or benefits, and being called: uninsurable, I had similar, yet new, intensified obstacles to overcome.    Needless to say, I moved back home and made healing a priority. 

After a few months of deterioration despite trying new treatment combinations and protocols, it was determined that due to the existing and growing toxicity, I had developed a resistance to one of the anti-fungal groups known as the "azole" group; or "azole resistance" that had been helping.  It was at this point, in December, after losing 20 pounds since September, when we began our efforts to begin treatment via infused medications. 

Delays and setbacks continued into 2012, including two recent relapses in February 2012, the new addition of seizures, including another increase in the debilitating neurological symptoms and now hair loss, and a very recent setback in March, blackouts.  Which I have just been informed is a sign that my CNS is losing the battle against the toxic mold.

As of August 2012, despite eating 5,000-7,000 calories per day, I continue to lose more and more body mass.  We are currently searching for an immunologist, neurotoxicologist, hyperbarics expert, or medical professional willing to join the fight.

In January 2013, our goal was to manage life with a compromised immune system, continue searching for solutions for improving neurological symptoms, and both the lungs and immune system.  I've been sleeping in a portable hyperbaric chamber for a few months and have even put on some muscle!  Looking forward to a great 2013!

At the end of March 2013, the focus had shifted to the decreasing lung function and finding a way to get an intravenous treatment.  Goal: find a cure, get healthy and manage permanent damage, spread awareness to the dangers of toxic mold and prevent others from having to endure a similar challenge.

Six months later, we have found a physician with the resources and attitude needed, who is trying just as hard to acquire me as a patient as I have been trying to do whatever it takes to become one.  October 2013 brought a reality check to the warrior.  We need to gain access to the help trying to break barriers to help me, or no matter how positive i am, my body will continue to deteriorate around me. 

November brought more of the same fight and the grateful addition of Medical Assistance and the targeted attempts to approve the IV Caspofungin (IV anti-fungal we've been fighting for).  December 23, 2013 the PICC line was put in and December 26, 2013 began the infusions of the Caspofungin!

Over the past year, the Cancidas as joined the fight!  We have added immune infusions every three weeks to try and rebuild/repair the immune system and connected systems.  Still working on a solution for the impact on the nervous system and as always, we are optimistic!

Over the past six months, we have temporarily halted the immune globulin infusions to see if/how my immune system will respond.  We have also increased the anti-fungal to its max daily dose. 

On a positive note, we continue to learn that mold is beginning to be studied more in humans and the results that have been discovered, even years before my exposure, match what is happening to both my immune and neurological systems.

I am so grateful, that my fuzzy helper, Kai, continues to grow in to his role of assisting me in the day to day, but especially seeing him step up when I need him the most.  He is truly a blessing.

In the long struggle ahead, I continue to be grateful for all that life has to offer and all of the good people I have been fortunate enough to be surrounded by; let joy rise up and help joy rise up in others whenever possible.  It is my long term goal to beat the mold and to return to teaching, coaching and once again positively contributing to the community full time.

Not only am I Penn State Proud, (PSWSoc 2005) but for me, my philosophy: persevere with courage and honor, goes beyond teaching, coaching, giving back, and positively inspiring & empowering young people, but living life to its fullest.  By asking myself one question, “Do I have victory inside?” I courageously do whatever it takes to earn the goal I have set, to win the elusive struggle within and to be truly victorious; all the while, never ever forgetting that we are all a hero to someone. A life lesson for all.

I know that each time I begin new treatment protocols, or endure existing ones, I still face a long period of treatment and recovery from what has shown to be a very debilitating and deadly condition.  But as so many know, I am a warrior, and I have and will do whatever it takes to get back up.  I push my mind, body and soul to the limits everyday to prevent further damage and recover what I can.  I am forever grateful to be surrounded by such amazing, loving people and for all of the support, prayers, love, and positive vibes that family, friends and good people kindheartedly continue to offer.  Please know that it all revitalizes my warrior spirit and that I send it back to all of you as well!