On a rainy afternoon, a young man of 19 was driving home from work. His car slid, then went out of control and landed on an embankment. There was no other car involved, and he was trapped for some time on the country road before someone went for help. Each minute of delay got him closer to the eventual diagnosis: quadriplegic.
These words describe an event in the life of a stranger. But this unemotional account tells the story not only of Edgar, whose young life is over in ways that we would call normal, but of a whole family. Edgar had a single mother, three siblings and no insurance.
For many weeks, he fought for his life at the Eisenhower Hospital in the desert with horrendous complications involving multiple tracheotomies and infections threatening his organs. Edgar's mother traveled hours each day to be with him, taking time away from work that caused her family's financial situation to deteriorate quickly. Strangely, in his rage at becoming disabled, Edgar began to focus all of his anger against his mother. By the time he was discharged, his wish was to stay in the care of a "facility," rather than to go home. How could that be? A psychologist could better answer the question, but there was no insurance coverage for Edgar to undergo clinical or psychological care.
It was at this desperate point that the Andre Sobel River of Life Foundation entered this seemingly hopeless situation: an uninsured paralyzed child and an emotionally, financially and physically diminished caregiver.
We got on the phone and encountered Marci Roth, director of the National Spinal Cord Injury Association in Washington. Her personal experience with her own young daughter led her to this work, and she applies herself with passion to each "case."
She quickly put her expertise on federal and state disability policy and her nationwide relationships at my disposal, along with her contacts with federal agencies and on Capitol Hill. We learned everything we could about Edgar's desperate situation and his prospects. Meanwhile, Edgar was referred for hospitalization to UCSF in San Francisco for a specialized treatment. His mother drove 12 hours in a truck to take him there for care, arriving in San Francisco with not even enough funds to stay at a hotel. So she slept in the hospital waiting room for two nights while Edgar was treated. When she was told that Edgar would not be released for another 10 days, his mom had to make the heart-wrenching decision to return to her younger children and to work. Edgar was barely speaking to her he felt so much rage.
Fortuitously, through our networking with Marci Roth in Washington, DC, we located a woman close to San Francisco who volunteered to visit Edgar each day and report on his condition to his mother. What happened later is the kind of miracle that life often produces in tight spots.
Edgar and his visitor Margarita Orozco created a bond so close that to this day, he lives in her home. Mrs. Orozco has a daughter who is ill, and she takes care of these two young people night and day. She asks for no remuneration. After nearly three years of nurturing Edgar, she continues to receive only a small payment from Edgar's Mom each month that ASRL supplements to cover out of pocket expenses.
When President Obama declared November to be National Family Caregivers Month, it was to highlight these unseen heroes who take care of loved ones even when there is no end in sight. At ASRL, we honor the single mothers and fathers who selflessly overlook their own health to take care of their children who have a life-threatening illness. I was one of those mothers; that is how the mission of this organization was born. But even after helping nearly 10,000 people, it was hard to foresee that women like Margaret Orozco exist.
After three years of constant devotion, it is the first time that Margarita has turned to us at the Andre Sobel River of Life Foundation for help. She can no longer manage physically to transport Edgar to his appointments without a proper wheelchair accessible van. As we enter the holiday season, we have set a goal of raising $10,000 to help this remarkable caregiver with her van down payment. If you are reading this, please take a moment to pass the word onto your friends and family and also to make a donation yourself. A donation of $100 will multiply quickly when you consider the power of our network to respond generously.
Contributions may be mailed to ASRL, P.O. Box 361460, Los Angeles, 90036 or made on our website at andreriveroflife.org. Thank you for helping us recognize the unseen caregivers who soften tragic journeys like Edgar's.
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