09/04/2026
As soon as we learned that Sawyer had Trifunctional Protein Deficiency and discovered how rare and serious it is, we began searching for the world’s leading expert in this disease. We did not care how far we had to travel or what it would take—we were going. Everywhere we looked, we found the same name: Dr. Jerry Vockley.
When we met with him for the first time, Dr. Vockley explained how his approach differed from more traditional treatment practices still being used elsewhere. He understood not only how these disorders had historically been managed, but also why some of those approaches would eventually become inadequate as patients aged. He was already looking ahead-using emerging science, closely following patient outcomes, and developing strategies that were showing promise in preserving function and extending lives.
That distinction matters tremendously. With a disease this aggressive, families cannot afford care that remains anchored in outdated thinking. Maintaining the status quo is not good enough when children are still declining.
In our first appointment, as Dr. Vockley explained what TFP can do to these children, I had to excuse myself several times to vomit. Hearing what Sawyer’s future could hold was gut-wrenching.
But then Dr. Vockley gave us news that was both hopeful and devastating: He had the science for new treatments and a potential cure, but all of his government funding had been cut and given to COVID research.
And in one split second, we realized that the only thing standing between our son having a fighting chance or surrendering to the inevitable…was money.
In that moment, we knew we would fight to the ends of the earth for our boy.
