It was Sunday, May 31st when 12-year-old Seth Harris lost his battle with leukemia. Two and a half weeks prior to that he had received a bone marrow transplant at the Blair E. Batson Hospital in Jackson. Although the transplant went well initially, family members say it was about five days after the procedure when Seth was diagnosed with a disorder known as "VOD" for short. It is a disease that develops in the liver due to high doses of chemotherapy and / or radiation.
That's when Seth's family says the real problems started, because they say according to doctors at the hospital, the only drug that could help Seth's condition was Defibrotide. It's a drug that has not been approved by the FDA but is still used some in the US.
According to Seth's family they were told by hospital officials that there was a great deal of paperwork involved in attempting to retrieve the drug and that it would be too difficult to get.
Seth's mom says this has left the family with many questions because a month prior to Seth needing the drug it had been given to another patient at the facility.
"They claim that the protocol had changed but we'll never know I don't guess," says Dawn Harris.
Because Harris' family says the extensive red tape was the sticking point, they decided to take matters into their own hands.
"The family was kind of in shock for the first 48 hours and then we just kind of did that, 'You know, she might not can get it but we might can," says Harris.
By using all sources available from the Internet and other health care and government contacts, Harris says the family discovered that the drug was available but the last hurdle to overcome was getting clearance from the hospital. In the end, family members say this clearance was ultimately granted about two weeks after Seth's diagnosis.
"So, he had 11 days that his body just kept going down. Trying to shut down without the medication and we cannot help but feel like if he would've got the medication in three to four days, which we now know is possible, that he might still be with us," says Dana Hendry, who was Seth's aunt.
Now the family is bracing to take steps to remove any such red tape involving this type case.
"We've got to get over our shock from loosing Seth and then we're going to get the ball rolling and just try to change things," says Harris.