Since I found sleep hard to come by, I got off the bed and picked up an old issue of New Yorker (January 20, 2014).
While leafing through the magazine, I hit upon an article on pediatric palliative care that had eluded my eyes during the first reading last month.
Lives Less Ordinary by Harvard Medical School Professor Jerome Groopman tackles an extremely painful subject – Young children getting dreadful, rare and hard to cure diseases (yes, it’s often a combination of diseases that attack these kids).
One of the young children interviewed by Groopman for the article is 11-year-old Gwen Lorimier.
In her short life, Gwen has experienced more pain and suffering than most of us ever go through in a long life.
At her tender age, the little girl has already suffered through the ordeals of pancreatitis, multiple organ failure, transplants of liver, stomach, small intestine, pancreas and spleen and (because of the immunosuppressive drugs used for the transplants), 50 tumors in her lungs, stomach, intestines and kidneys.
Gwen, who was diagnosed early with Mitochondrial Disease, told the author:
I have an energy-deficit disorder, which means that I don’t produce enough energy in my cells to power my body correctly. My organs don’t work properly, which makes me have all sorts of problems, especially my stomach, intestines, liver, and pancreas. As one of my doctors put it, ‘Her organs are trying to kill her from the inside.’
Source: New Yorker, p.34. January 20, 2014
Despite a lifetime of agony, Gwen maintains a joie de vivre (zest for life) rare in people of any age, let alone in a person with so many health issues.
The little girl even has a web site, and an occasionally updated blog, at Chronicallycool.com about her experiences and with links to games and important resources for ailing kids and their parents.
Gwen Lorimier is SI’s Cool Person of February 2014.