Give Hope and Healing for Katie

Help Provide Hope and Healing for Katie

For the past 4 years, my daughter Katie has been battling a number of unexplainable and exhausting illnesses. As a result, she has been unable to fully take care of herself and became disabled. Katie is only 36 years old.

Previously, Katie was healthy, physically active, self-sufficient, and held a rewarding job with a promising career. She spent much of her free time enjoying the outdoors - hiking, camping, exercising, cycling, kayaking, running (Portland Marathon, triathlons, relays etc) - birdwatching, working on her house, and spending time with her family, especially her young nephews.

In 2018 with the sudden onset of multiple symptoms, she began to experience a noticeable and serious decline in health. During these ‘episodes’, she would suffer severe cognitive impairment - have trouble forming/recalling words, processing auditory and sensory information and reading. Basic tasks like driving, cooking, bathing and eventually walking - things that healthy people take for granted - became difficult.

Over time these episodes grew more frequent, lasted longer and were more severe. Katie began to experience profound debilitating fatigue and weakness, brain fog, inability to concentrate and form words or thoughts. She saw multiple medical specialists over the next 2 years but did not get any lasting treatment to help her or a diagnosis that explained all her symptoms. These symptoms continued to worsen and her health declined further and by May of 2019, Katie could no longer work at her job.

— FROM KATIE —

“My life just disappeared. Everything I could do before, became impossible.

At the worst, I couldn’t process verbal/spoken words and for a long time, I couldn’t read. My brain was shutting down. I couldn’t speak more than a few words to communicate. And I’d have to wait until I had enough energy to get the few words out. Eventually I would write the word on a piece of paper or try to point to what I was talking about. I couldn’t process auditory noise, even if it was an ambient sound.

My short-term memory and recall capabilities dissolved and it felt like I was getting Alzheimers over and over, throughout the day. I couldn’t make sense of my environment, my brain couldn’t visually process it. It was like I became allergic to everything: sound, light, motion, touch, being able to think or talk or process words. Like I was alive, but everything was just shutting down neurologically.

Physically I had trouble standing and holding myself up. When I could get up and make it to the bathroom, that would be all I could do. I now understand what I was experiencing is called Post-Exertion Malaise. It was so severe I couldn’t roll over or push myself up in bed for many many months”.

Now, Katies’ weakness is profound and widespread. Her symptoms are made worse by sitting and standing, so she spends more than 90% of her time lying down. She became unable to fully take care of herself and moved in with her Mom in a 1-bedroom apartment two years ago. Her Mom is now her primary caregiver —managing all household duties, driving her to appointments, filling prescriptions, shopping and preparing most meals. Visits by family now are less often and short to prevent her crashing. This is especially distressing for Katie – she’s a very social person.

— Getting Some Answers —

In 2021, Katie learned about a clinic in the Bay area with nationally-recognized expertise in diagnosing and treating complex, chronic illnesses. She was accepted for evaluation and underwent extensive testing. The clinic found her debilitating symptoms were caused by not just one, but a number of medical conditions, including these:

Also, MRI scans of her spine showed signs of Cranio-Cervical Instability and further evaluation will be needed at a clinic in New York in 2022.

Finally, Katie was able to get answers that explained the severe and complicated illnesses she has suffered through for the past four years.

— Hope and Healing —

In 2022 Katie will begin treatments by the clinic for the 3 Tick-Borne Illnesses, Mast Cell Activation Disease and Dysautonomia. Katies’ attending doctor, an expert who has dedicated her career and specialty to these diseases, will oversee her care. (YAY!!!) Additional Cardiopulmonary Exercise Testing and an evaluation of her Cranio-Cervical Instability will also be needed.

Also, an application for Social Security Disability benefits is being prepared to help with her future living expenses. Due to her cognitive impairment, she doesn’t have the capability to complete the necessary SSDI application. Katie has hired a professional company to prepare the documentation and application materials.

Katie’s medical costs are increasing greatly as her treatments are completely out of pocket expenses. Despite having a minimal health insurance plan, it does not cover most of the required treatments and doctors Katie will need to see. Her mother and I are in our mid-70’s on fixed incomes. We have limited ability to help with her growing medical costs.

As a result, we are asking for your help to cover Katie’s known medical expenses for this coming year, currently estimated at $32,000.

The donations will help with the following estimated costs:

Treatment for tick-borne infections ($15,000)

Further diagnostic workup including Cardiopulmonary Exercise Testing ($2,700) + travel expenses $1,000 and consultation for Cranio-Cervical Instability ($350)

Cost of medications for one year ($4200)

Sleep device ($1,400)

Cost to apply for SSDI $6000 and fee $1200.

— FROM KATIE —

“I know the road ahead to regain my health may be long, and some of these illnesses may not go away completely, but I know I’m finally in the right care. I am hopeful and determined to gain back quality of life, so that the past four years are a detour rather than a dead-end.”

— OUR THANKS —

Thank you greatly for taking the time to read Katie’s story. Any donation, no matter how small, is greatly appreciated.

If it’s not too much to ask, please share our campaign link on social media (Facebook, Instagram, etc.) and with your friends and family.

We will keep you posted on the use of donations and her progress. I know she would greatly appreciate receiving words of encouragement from you as well.

Lastly, the links below give more detailed information on Katies’ illnesses if you’d like to know more. We’re encouraged by the rapidly expanding research and studies on these complex diseases.

Links:

http://www.dysautonomiainternational.org/

https://rarediseases.info.nih.gov/diseases/5824/an

https://www.wjgnet.com/2218-6204/full/v3/i1/1.htm

https://solvecfs.org/me-cfs-long-covid/

https://my.clevelandclinic.org/health/diseases/15631-autonomic-neuropathy-or-autonomic-dysfunction-syncope-information-and-instructions