Jason's Healing Journey

Welcome to Part II of Jason’s Healing Journey!


This campaign was originally hosted on Youcaring.com, which has now merged with Gofundme.

Many thanks to all of you who have joined in Jason’s Healing Journey. As a result of your efforts, we have raised 80 percent of our funding goal to cover Jason’s medical treatments.

We invite you to watch Jason’s Healing Journey Part I and Part II, and to share the videos and resources here with your friends and acquaintances. With your help, we can reach our goal.

THANK YOU!



The original video of Jason’s Healing Journey told the story of Jason’s life and illness with tick-borne diseases.

Living and traveling across the globe, Jason is a connector of people and an advocate for social justice. This was all cut short and put on hold from a mysterious illness that took him to doctors and hospitals around the world.

The first video was a plea for help: for encouragement, generosity, and prayer. You answered this call and moved Jason further along. And your generosity has helped to make his treatment possible.

Since our last video, we have had many improvements and setbacks.

We have seen Jason not able to get out of bed, unable to walk or speak; we have seen him go month after month on difficult IV Treatments, and in the hospital unconscious and with seizures.





The last time Jason was hospitalized, his condition had become so dire that doctors suggested a nursing home. But he came through it, learning to walk again – learning how to function. 

We’ve endured many of these debilitating events with worry and heartbreak as we see our son and brother suffer. Every family member gladly pitches in to support, but Lyme disease has disrupted all of our lives in so many ways. Jason’s illness has become a family journey.

Yet, another part of this story is his dedication to continuing the fight and the improvements we see month by month. Undoubtedly, he has a long and difficult road ahead, but hope and courage propel us forward on his healing journey.





Thank you for joining us on Jason’s Healing Journey. Your support continues to uplift Jason and our whole family, and your generosity has helped him to access critical treatment as he slowly regains his strength and abilities.

Please share this story and help us reach our goal by visiting: gofundme.com/WeAreTogetherJason




Original Text


JASON MAGLAUGHLIN: Fierce and loyal friend, creative problem-solver, activist and humanitarian, boundary-pushing provocateur, life-of-the-party, dedicated brother, son, and uncle, curious globetrotter, open-minded educator, intelligent and inclusive advocate. Jason is infamous for chanting slogans, and one that many know well by now is TUPO PAMOJA, which in Swahili means We Are Together. 

After fighting a debilitating illness for nearly 3 years, Jason needs us to show him the meaning of TUPO PAMOJA by raising resources for his treatment and care, and by surrounding him with love, support, and prayers.








JASON’S CONDITION

Jason first fell seriously ill in May 2015 while in Turkey, and returned to his home in South Africa after stabilizing. He continued to suffer bouts of high fever, severe bone and joint pain, and flu-like symptoms, sometimes being hospitalized for weeks on end while doctors tried to uncover the cause.

He has spent 36 weeks in hospitals and been treated by several dozen doctors, enduring a tortuous list of surgeries, procedures, biopsies, and treatments. Throughout, Jason has received various and at times competing diagnoses, including: Zika, Chikungunya, thyroid tumor, Rickettsia, malaria, suspected lymphoma, meningitis, multiple sclerosis, Lyme disease, and amyotrophic lateral sclerosis (ALS). Some proved to be false diagnoses, while others continue to be explored and treated.

Jason began evaluation and treatment in the US in late 2016. The months ticked by, bills piled up, and doctor after doctor was concerned and genuinely trying to find an answer. A definitive diagnosis remained a mystery and the medications necessary to treat his increasing symptoms grew to a complex and dangerous cocktail, yet his progressive decline was undeniable.

In July, our family was shaken by the dramatic downturn in Jason’s health. We witnessed him unable to walk without help, and unable to speak full sentences. His eyesight was waning and unexpected noises would send him into seizures. He lost function in his left hand, and the twitching in his muscles could be seen across his body. Swelling in his brain took away his appetite and ability to swallow, resulting in the loss of 40 pounds.

Equally devastating, Jason’s once manageable cognitive deficits were now diagnosed as dementia. His forgetfulness leaves him hopelessly confused at times, unable to remember why he's in a room, or that he's already prepared a drink, or how to use his smartphone, or even how to spell his last name. He often forgets the topic of conversation mid-sentence, making social interactions very difficult.




WHAT’S HAPPENING NOW: TESTS & TREATMENT

In August 2017, Jason was referred to the ALS Clinic at the University of Virginia. He also began intravenous treatment for Lyme neuroborreliosis. Showing strong improvement, he relapsed after standard treatment, continuing a cycle of decline.

His visit to the ALS clinic confirmed what we already knew: he has worrying features of neurodegeneration (progressive damage to his neurological system). To definitively diagnosis many of the diseases in this group, infectious disease must be treated or ruled out. Jason continues to be under the care of a team of neurologists focused on treating symptoms.

This fall, Jason became a patient at the Jemsek Specialty Clinic in Washington DC, which focuses on tick and insect borne diseases. Tests and a comprehensive exam yielded a diagnosis of severe Lyme Borreliosis Complex with multiple infections. Under their care and coordination, he has initiated tailored and intensive intravenous therapy.

Additionally, Jason has been referred to John’s Hopkins University Division of Infectious Diseases for further evaluation and treatment. He continues to work with doctors from multiple specialties, and currently takes 26 prescription medications.

Jason’s situation is deeply complex because of his travel and work history, his multiple infections, and the degree of neurological involvement. Only now, after almost three years, are we able to access the experts that can adequately test and treat.

WHY ARE WE RAISING MONEY?

Many of the specialists and treatments Jason needs are not covered by insurance because they are out of network or investigational. Insurance costs, home nursing visits, IV maintenance, MRIs, weekly blood labs, medications, and medical supplies come at an exorbitant cost.

Throughout his illness, there has been obvious disagreement between the many specialists treating him. It is Jason’s wish that we explore aggressive treatment as he still has abundant hope and a yearning to reconnect with those in his life.

He has a new passion for patient advocacy, and believes that his background and current experience intersects to put that passion into practice once he heals. 

Please see Updates section for budget information.

KEEP UP WITH US

This platform gives us a great opportunity to stay connected. Check back often to learn more, or sign up for email updates below. Add your words by using the Comments section.

Please take time to check the Updates section below to find out 3 ways you can help today!

Moving forward, we’re excited to provide information on Jason’s progress, on our perspectives and experiences, and on some the science and controversies of “Lyme Disease.”  

ABOUT JASON

Jason Maglaughlin was born and raised in Canyon, Texas, and is the middle child of five. In high school his family moved to Aiken, South Carolina, where he graduated. Curious about his place and other cultures, he studied Anthropology and Religious Studies at the College of Charleston, where he was a member of Pi Kappa Phi Fraternity, and began his community organizing and activism. Jason joined the Peace Corps in 2005, and worked in rural Tanzania for 3 years - a life changing experience that set his compass firmly toward humanitarianism. Returning from the Peace Corps, he relocated to Washington DC, where he worked to improve academic achievement gaps in underserved neighborhoods, and as a director of SMYAL, an LGBTQ youth organization. Eventually, Jason endeavored to return overseas and began NGO consulting work in East and North Africa.  In 2013, he moved to Johannesburg, South Africa, to join the team at CIVICUS working to strengthen civil society around the world. With ongoing and serious medical problems, Jason returned to live with his family in Virginia in late 2016, where he continues to receive medical care from a team of doctors across the region.

Jason has an eclectic range of hobbies and interests to draw upon for a problem-solving challenge or philosophical conversation. Through all of these, he weaves a unique sense of humor and an uncanny ability to bring people together. After all, Jason has been around the globe starting chants, to which our collective answer is: Yes, We Are Together!

Thank you for being a part of Jason’s Healing Journey and helping to make this possible!  

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HOW YOU CAN HELP

Thank you for being a part of Jason’s Healing Journey, and reminding us that true community and relationships are all that really matter. When one or many of us are downed, it is our service and purpose to show up and to lift up. Jason has dedicated his life to working with others around the world and to seeking justice for the most under-resourced amongst us. It's now his time of need.


You can help in 3 important ways:  


1. Share this story with his friends and your friends:
By helping us get this story out, you enable us to achieve the goals below, and assist in passing a message to Jason’s friends who likely wonder where he went. Please use the social media buttons on this page, use the YouTube video above, and direct people here: gofundme.com/WeAreTogetherJason. Remember, every share can raise $37!  


2. Donate, if you can, to help cover medical bills and supplies:
Everyone's purse is different. We are so deeply, sincerely appreciative if you give any of your precious resources. And if you cannot give of your monetary resources, we know you'll be sending love and care and prayers, which are just as vital.   

3. Leave your messages of support, your memories, and your words:
Your messages and memories would mean so much to Jason and his family in the tough and uncertain moments of this struggle. Please scroll down to the comments section, and don’t be afraid of humor, we know Jason wouldn’t be!  


THANK YOU!