Four-year-old Wyatt Haney has been fighting for his life since the day he was born at a Joplin, Mo., hospital. 11 months after he was born, Wyatt’s family and his medical team had an answer—TPI, or triosephosphate isomerase deficiency. TPI is an extremely rare genetic multisystem disorder first identified in 1964. Since that time, only 100 patients have been diagnosed worldwide, and only four are living today. Wyatt is one of those four.

Patients with TPI lack the enzyme necessary to break down certain sugars in the body. In addition to hemolytic anemia, they also experience severe, progressive neurologic and cardiac symptoms.

The disorder is inherited. Both Amanda and her husband, Bobby, are carriers, but their other two children are unaffected.

With the TPI diagnosis in hand, Dr. Sharma referred Wyatt and his family to Doug Myers, MD, a pediatric hematologist/oncologist with expertise in bone marrow transplant at Children’s Mercy.

After carefully weighing the pros and cons of transplant with the BMT team, Amanda and Bobby agreed this was Wyatt’s best chance for long-term survival. On Nov. 1, 2014, Wyatt was admitted to Children’s Mercy for chemotherapy to suppress his immune system for the transplant. On Nov. 12, he received his first bone marrow transplant from an anonymous donor.

A few weeks later testing revealed Wyatt’s transplant was failing. That’s when Dr. Myers suggested a second transplant using the donor’s peripheral blood cells but again, Wyatt’s immune system rejected the transplant.

Then Wyatt got very ill and was admitted to the hospital. A few days later, he was transferred to the Children’s Mercy Pediatric Intensive Care Unit with a life-threatening infection.

After getting the infection under control, Dr. Myers recommended a different option for Wyatt, a transplant using cord blood.

By this time, Wyatt’s immune system was worn down, reducing the odds of rejection. On May 5, 2015, Wyatt’s family and friends prayed the third time would be a charm, and their prayers were answered. “Wyatt’s body accepted the cord blood transplant” Amanda said.

Finally, Wyatt was on the road to recovery. Four months after being admitted to the hospital, he was ready to head home to Galena. Though it’s possible other TPI patients have been successfully treated with blood-forming stem cells, based on literature searches, it appears Wyatt may be the first and only one in the world to survive.