From 1 in 7 Billion to 1 in 625

This past December, just 2 days before Christmas Eve, my brother, Tony, went to Urgent Care for discolored urine, nausea, and loss of appetite.

72 hours later, just one day after Christmas, he was in the ICU at Oak Hill Hospital suffering from acute kidney failure, low hemoglobin/low platelet counts, and renal hypertension. Basically, after 30 healthy years as an athlete and active adult, his body was suddenly shutting down and no one could figure out why.

After a kidney biopsy, multiple blood transfusions, several tests/scans, and the installation of a hemodialysis catheter, it was determined that Tony was diagnosed with Atypical Hemolytic Uremic Syndrome, or Atypical-HUS (aHUS). aHUS is a rare, complex genetic disease, that is potentially life-threatening, as the response compromises the body’s immune system. There is an exhaustive list of triggers that can cause this response and many factors continue to remain unknown, including the genetic and environmental, as only 625 people in the country, per year, share this diagnosis.

Despite spending 15 days in the hospital as a patient in two different ICUs and being hospitalized twice following his initial discharge due to complications, Tony has been able to work with the incredible teams at Tampa General Hospital and Moffit Cancer Center to establish a plan of care that he has been responding well to for the last 2 weeks. With the help of various medications, outpatient hemodialysis treatments 3 times a week, and infusion therapy once a week, his levels are slowly improving.

While this diagnosis has brought moments of heartbreak as we continue to accept that this is something Tony will ultimately always be affected by, we are grateful for the hand God has had in this season. We know it is through His provisions and the village he has gifted us with that Tony will regain the function of his kidneys and ultimately be able to live a healthy and fulfilling life.

Tony has been fortunate enough to maintain employment despite the shock of his diagnosis, but due to the untimeliness, even with insurance, he will continue to experience a financial burden as a result of this disease. Although the specifics of his diagnosis continue to be unknown, one thing we are sure of is that the infusion treatments he receives through Moffit Cancer Center could potentially be lifelong. We have started a GoFundMe account in hopes that his friends, our village, and the community will give what they can to help bring some relief to the unfortunate, unexpected, and unknown circumstances he is facing.

For more information on this disease please visit the link below:

https://rarediseases.org/rare-diseases/atypical-hemolytic-uremic-syndrome/

“I have a wonderful support system of friends and family, a team of doctors and nurses that help guide my recovery, and a pretty optimistic outlook given the circumstances... our genetics are too good to let a genetic disease kick my ass."

– Tony Webster