Rare Diseases

Blood drive honors boy who survived rare disease

MARION – When Leon “Lee” Garfat was just 4 months old, he was diagnosed with a rare disease that attacks the immune system. His family was told that without treatment, he would not live past the age of 2.

“The doctors said that he had a disease that was not only affecting his immune system, but causing damage to his thyroid,” Lee’s grandmother, Wendy Meachem, said. “We were told if Lee did not receive a bone marrow transplant that he would die.”

Lee received his transplant and has thrived. Now, his family has planned a blood drive in the boy’s honor — one way of expressing their gratitude to the donors who helped save his life.

Lee was diagnosed with a genetic disorder commonly known as IPEX Syndrome, which causes a certain protein in the body to not be properly transported, leading other autoimmune cells to attack the body’s own tissues.

“We were told that there have been only 250 cases reported worldwide,” Meachem, a former Marion resident, said. “It was a day-to-day struggle for us.”

Lee’s family was told that bone marrow transplants had been successful in the past in treating the syndrome and he was placed on a list.

Amazingly enough, they found a donor for Lee on the first day, something that does not happen often, according Lee’s physician Rebecca Green.

The transplant was successfully completed on Dec. 2, 2014, in St. Louis, Missouri.

“You would never know that he was ever sick, looking at him now,” Meachem said. “He still takes thyroid medication and has diabetes, but other than that, he is completely healthy.”

Now 3 years old and no longer suffering from complications of IPEX, the Springfield, Illinois, boy will have a blood drive thrown in his honor by the North Central Ohio chapter of the American Red Cross in Marion this week.

The blood drive will take place 6:30 to 11:30 a.m. Wednesday at the Genesis Health Presidential Center nursing home, 524 James…