Support Steve’s Fight Against Chronic Schistosomiasis

Dear Friends, Family, and Supporters,

Many of you may not know that our dear friend Steve (Tully) has been quietly battling the devastating effects of chronic schistosomiasis (bilharzia), a parasitic disease caused by blood flukes. Schistosomiasis is one of the world’s most destructive tropical diseases, contributing to more than 200,000 deaths annually across Africa, Asia, the Middle East, and Latin America.

In 2010, after working on Sports for Development initiatives in South Africa, Steve traveled through southern and eastern Africa. While kayaking on Lake Malawi, he unknowingly contracted both S. haematobium and S. mansoni parasites.

Seventeen days later, Steve was hospitalized in Mozambique with an illness that is now confirmed to have been Katayama Fever - an acute immune reaction to the parasites. Misdiagnosed and improperly treated - first for malaria, and then for food poisoning (with antibiotics) - the true cause of illness went undetected. After returning to the US, his symptoms eventually subsided, and he carried on with life, unaware of the long-term damage already underway.

For the next 13 years, the disease progressed silently, slowly damaging Steve's organs and tissues. Then, in August 2023, he began experiencing severe symptoms - intense pain, inflammation, and organ swelling. After extensive testing and a diagnostic procedure in Buffalo, NY, Steve was finally diagnosed with chronic schistosomiasis. He immediately began treatment, undergoing two rounds of Praziquantel chemotherapy under the care of infectious disease specialists. (Unfortunately, his immune system crashed from the chemo drug, and he was then hospitalized with a severe case of the shingles, which took months to resolve.)

Although the parasites have now been eradicated, millions of dead eggs remain embedded in his tissues. These remnants have provoked a persistent and painful cytokine-driven immune response that has resulted in strictures, widespread fibrosis, chronic inflammation, venous insufficiency, and the formation of abnormal tumors and lesions throughout his organs and body.

From the outside, Steve looks well. But, on the inside, his body is waging a brutal war.

Steve has consulted leading specialists at Johns Hopkins, Penn Medicine, George Washington, and has contacted experts from the CDC, NIH, Egypt, and Malawi. He has already undergone numerous procedures and surgeries and, despite having health insurance, has spent $25,000+ USD out of pocket searching for answers - still without a clear path forward.

Throughout this ordeal, Steve has done his best to live a normal life, but the toll has been immense.

One urologist at Penn summed it up painfully:

"I’m very sorry. There’s nothing we can do until it turns into cancer."

Sadly, US-based doctors lack the experience to effectively treat this neglected tropical disease, leaving Steve with few options.

Refusing to give up, Steve and his family researched alternative options and applied for mesenchymal stem cell (MSC) therapy at the world-renowned Stem Cell Institute (SCI) in Panama. After months of back-and-forth with medical reports and health clearances, Steve was finally approved at SCI, and will now travel with his Mom on Sunday, May 11 for his first week of treatment.

While there are no guarantees, this therapy offers his best hope to reduce fibrosis and inflammation, potentially preventing bladder cancer, kidney damage, or liver failure.

The cost, however, is significant: approximately $27,000 USD per session, with at least three sessions recommended - totaling over $80,000 USD.

We are launching this GoFundMe campaign with a goal of $50,000 USD to help ease the financial burden and give Steve a real chance for improved health.

If you know Steve, you know he radiates joy, humor, and heart. He lifts up everyone around him. Now it’s our turn to lift him up.

Every donation will go directly toward Steve’s medical expenses. To ensure full transparency, a separate account has been established under his mother, Anne, who will manage the funds in accordance with IRS guidelines for personal gifts.

Please consider donating and sharing this campaign. Every contribution - no matter the size - brings us closer to giving Steve the healing he desperately needs.

On behalf of his friends, family, and loved ones, we thank you.

With heartfelt gratitude,

Shannon and Fred ("Chef") Kedzior

(Steve’s Appalachian Trail friends in Philadelphia)

PHOTO CAPTIONS:

Photo 1: Steve hospitalized at the Nampula Central Hospital in Nampula, Mozambique. (September 2010)

Photo 2: Steve kayaking with his friend, Mbuso, on Lake Malawi - a beautiful, serene lake that harbors invisible dangers. There were no warning signs about the risk of schistosomiasis. (September 2010)

Photo 3: A microscopic image of the Schistosoma parasites. These blood flukes travel through the bloodstream to vital organs like the liver, intestines, and bladder, where they mature into adult worms. Once there, they begin laying eggs, which cause long-term damage to tissues and organs.

Photo 4: Steve’s body is riddled with abnormal tumors that remain clustered around vital areas. These were excised and biopsied following a surgery in Washington, DC. (March 2025)

Photo 5: Steve at Penn Medicine in Philadelphia following a surgery when doctors discovered a fibrotic ureteral stricture. (August 2024)