UPDATED: Family talks about experimental drug they hope will save Hardy’s life

Posted at 1:39 PM, Mar 12, 2014
and last updated 2014-03-13 01:17:04-04

FREDERICKSBURG, Va. (WTVR) - It's the call Mae Staton had been praying about for quite some time.  Her grandson, seven-year old Josh Hardy, needed an experimental drug to survive a deadly virus.

On Tuesday, Staton got the call from her daughter, saying that Josh would get the medicine.

"I just screamed," said Staton about the call.  "I was just so excited.

Hardy, who at seven years old has battled cancer his entire life, came down with the virus following a bone marrow transplant last year.

His doctors say beating the virus will require one particular drug called brincidofovir. The company Chimerix, which makes the drug, originally said it could not be released outside of controlled clinical trials. 

"We had almost gotten to the point that were giving up; that [Chimerix] just weren't going to do it," said Staton.

Staton said her grandson knew the gravity and details of his situation the entire time.  The seven-year old has been in and out of the hospital nearly his entire life, so Staton said he possesses an advanced knowledge of the medical field for his age.

Hardy, his parents, and his brothers are at St. Jude Children's Hospital in Memphis, Tenn., where Hardy will be enrolled as the first patient of an open-label trial of brincidofovir.  Doctors told his family the drug can significantly improve his condition in as little as two weeks.

Chimerix president and CEO, Kenneth Moch, told CBS News they had been working with the FDA for some time trying to figure out how to get Hardy the drug.

"People sometimes loss sight of the fact that it's a regulated process, and we're doing our best to work as quickly as we can," said Moch.

St. Jude, the Memphis hospital where Hardy is being treated, released a statement: 

This drug is experimental and has not yet been approved by the FDA and the safety and effectiveness of the medication has not yet been established for use in children. For this reason, it  will be administered under a new treatment protocol as approved by a committee charged with compliance to federal and institutional regulations for clinical research (IRB).  It is also important to understand that this remains a critical and complex medical situation.

St. Jude will continue to pursue state-of-the-art treatment for Josh and all of our patients.  We are grateful for the efforts of Chimerix, the FDA and many others who worked to achieve this outcome. We ask that you continue to keep Josh and his family in your thoughts.

"Just to know that Josh has a chance; he's going to make it," said Staton.