Sojourners received this letter in response to our action alert last week calling for your letters and prayers to challenge Glenn Beck's view of the health-care debate:
My granddaughter Lily is six years old and has glutaric acidemia type 1. The disease is a metabolic disorder and is genetically transmitted. Lily began having seizures just after her first birthday and was rushed to the hospital. Upon arrival, her condition was misdiagnosed as shaken baby syndrome. It took us three days and a lawyer to have her transferred to The Children's Hospital in Denver where she was correctly diagnosed and treated. Had they correctly identified her disease right away, she would be far less disabled. As it is, she is paralyzed except for her facial expressions. She cannot talk, walk, eat, or move at will. The dystonia and other complications from her disorder will very likely kill her in or before her adolescence.
Nonetheless, Lily is a wonderful and angelic child who brings joy to anyone fortunate enough to be in her presence. I hope someday to be as brave and spiritual as she appears to be. And this brings me to my point: Lily's health care, as we have been told by doctors and lawyers, will likely exceed ten million dollars if she lives into adolescence. Without the generosity of our community and government support for her health care, we could not possibly provide the care she needs.
Sarah, my daughter, must attend to Lily 24 hours a day and cannot work. Lily's father abandoned her when he found out about her disease. My daughter is now a statistic. She belongs to one of the largest groups of people in poverty -- white single women with children. However, with improved access to medical care and with relief from the cost of treatment, Sarah and Lily could lead a much more normal, and perhaps longer, life.
I am not afraid that my country will euthanize my granddaughter. But I am afraid that the cost of her health care will escalate until she loses any chance at all for proper treatment. Please let Glenn Beck know that without a radical revision in how this country cares for its children with health problems -- including his own daughter -- that children like Lily won't have a fighting chance. Mr. Beck likely has the money to afford a great insurance policy for his daughter. Sarah and Lily do not. I will certainly pray for his daughter, but I also pray daily for Lily.
Dr. Paul Kordis is an author and professional speaker with a PhD in Human Capital Sustainability -- that is, the systems, institutions, artifacts and relationships that improve people's quality of life and enhance their ability to contribute to the common good. Learn more about his granddaughter Lily at thelilyfoundation.org.