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Anthony, my 5-year-old son, has been battling minimal change nephrotic syndrome since he was 2. Diagnosed after a bizarre swelling episode post-COVID, he’s become the “head-scratcher” for doctors due to his atypical symptoms, minimal swelling, and little to no treatment response.
Through it all, Anthony has learned resilience.
We’ve tried steroids, tacrolimus, and retuximab, but he has yet to reach remission. Anthony has had two biopsies and genetic testing done, but his condition remained unchanged. He continues to spill 300+ protein daily and somehow stays strong. Despite all this, we’ve refused to let the disease control his life. He’s active, goes to school, and enjoys life just like any other kid. Whether it’s eating at parties or playing sports, we do our best to let him be himself.
Our hope lies in new research and treatments and in our decision to give tacrolimus another shot. So far, he has had minimal side effects. We’re also exploring new avenues, including Boston Children’s Hospital, where we’re contributing to the Big Kids Study research efforts.
Through it all, Anthony has learned resilience. He wants to be a kids’ doctor and a firefighter, showing a desire to help others even though he’s been through so much himself. We’re incredibly proud of his strength, his ability to inspire others, and his admirable and unwavering spirit.
We are forever grateful for the support from his doctors, especially Dr. Stephanie Kerkvliet and Dr. Wei Tan. We will continue to fight this disease with love, hope, and determination, and pray that the challenges Anthony faces will soon be answers for the warriors of the future.
