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article imageOp-Ed: Fredericksburg first-grader fighting for his life

By Tim Sandle     Mar 7, 2014 in Health
Fredericksburg - Josh Hardy, a seven-year-old boy, is currently fighting for his life. Josh is suffering from a rare viral disease. His family have put out an appeal for help.
When he was nine months old, Josh Hardy was diagnosed with a malignant rhabdoid tumor of the kidneys. It is a highly aggressive, rare form of cancer that only 15 children are diagnosed with each year.Two years ago Josh Hardy defeated the cancer thanks to a bone marrow transplant. Josh has spent the past two years helping raise money for other kids at St. Jude Children’s Research Hospital, where he was treated.
However, since then, Josh, who attends Hugh Mercer Elementary School in Fredericksburg, developed an adenovirus. Adenovirus causes a wide range of illnesses, from mild respiratory infections in young children to life-threatening multi-organ disease in people with a weakened immune system. The infection is very dangerous for people with weak immune systems.
The virus has resulted in Josh in the intensive care unit at St. Jude. Bringing the issue to people's attention, Josh’s mother, Aimee Hardy, wrote in a post on her son’s CaringBridge.org website: "Normally, Josh’s immune system would be able to handle the adenovirus if his immune system was set free. The challenge is his immune system can’t be set free yet because his body is still trying to adapt to the new bone marrow cells. So to keep the body from killing the new cells, they have to suppress the immune system, thus creating ideal conditions for adenovirus to advance. Catch 22."
The Caring Bridge site allows people illnesses, or their families, to reach out to the wider public. The mission of the site is "To amplify the love, hope and compassion in the world, making each health journey easier."
There is one drug, that is close to going to market that could potentially help Josh made by the company Chimerix. However, the drug is not available right now. According to the American Cancer Society’s website, medical professionals can request a drug for “compassionate use” in relation to the treatment of a seriously ill patient, which allows the use of a new, unapproved drug when no other treatments are available.
Josh's doctor put in a request for use of the drug. Under the “compassionate use” rules, if the company agrees, the patient’s doctor works with the drug company to ask the U.S. Food and Drug Administration to approve the drug for use by this one patient.
However, the drug company, Chimerix have not responded to the requests. Josh's mother has started a campaign to lobby the company to release the drug for her son. She fears that otherwise Josh's condition will continue to deteriorate. She is asking people to use Twitter to tweet @chimerix and use #savejosh.
This opinion article was written by an independent writer. The opinions and views expressed herein are those of the author and are not necessarily intended to reflect those of DigitalJournal.com
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