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| Annie O'Neill, Post-Gazette Chrystal Harris with sons Khristian, 4, Kenneth, 14. Click photo for larger image.
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She was going to drug treatment and trying to stop the downward spiral when things got a whole lot worse.
Her 9-year-old son Kenneth, a normal, baseball-playing kid, began to disintegrate. Eventually diagnosed with Guillain-Barre Syndrome, which attacks the nervous system, he went blind within five days, lost the use of his limbs and nearly died. He spent more than four months in intensive care at Children's Hospital, followed by five months in rehabilitation at The Children's Institute.
By the time Kenneth's sight returned and he was released to live at home, Ms. Harris had learned how to maneuver him in a wheelchair and lift him one leg at a time up the steps to her third-floor apartment. Less than two weeks into this new routine, Ms. Harris was straining with Kenneth on the stairs when she went into premature labor.
Second son Khristian arrived early and weighed a mere 2 pounds, 2 ounces. His lungs were underdeveloped. He spent four months in intensive care, followed by some 30 operations, mostly to keep open the breathing hole in his neck. He still cannot speak but understands just about everything and relies on sign language to communicate.
With her single mom's life suddenly consumed by the needs of her boys, Ms. Harris' daughter Kendra, now 6, "got lost," Ms. Harris said. Kendra felt ignored and starting acting out. She lives with her dad now, while mother and daughter work to rebuild their relationship.
As a result of this cascade of troubles for her children, Ms. Harris' full-time job this holiday season is simply taking care of them. And all of her "paychecks" -- in the form of child support and supplemental income and disability payments from Social Security -- go to their needs, with precious little remaining for toys or treats.
A typical day for Ms. Harris begins at 5:30 when she wakes, brews coffee, takes a shower, gets the boys up, makes them breakfast and helps them get ready for school. Both wear braces on their legs, and Khristian's breathing bag, oxygen tank and other equipment must be checked and prepped.
Kenneth walks to Wilkinsburg Middle School around 7 a.m. as the ACCESS van comes to pick up Khristian and take him to Child's Way in East Liberty, which provides day care for medically fragile children.
Ms. Harris rides with Khristian to and from Child's Way because his breathing apparatus needs constant attention. She usually walks the 3.7-mile return trips in the morning and afternoon because she has a seizure disorder and cannot drive.
This leaves just a few hours most days for buying food, paying bills and doing all of the other day-to-day tasks that any family must perform, plus ordering medical supplies, juggling appointments and doing paperwork for the nine doctors and therapists involved in her children's regular treatments, and arranging for appropriate play or after-school activities.
Then there's the cleaning. A lot of cleaning.
Khristian is highly susceptible to infection due to his tracheotomy and his compromised immune system. So his room and the bathroom and all of his ventilation machinery must be checked and cleaned every day.
Khristian just got over a scary three-week bout of fever and pneumonia, which kept Ms. Harris or her older son constantly at his side to monitor his temperature and his breathing and to suction his tracheotomy so that it wouldn't clog.
Just as Khristian got better at the beginning of this week, Kenneth's temperature spiked. He's now being treated for an ear infection, a relatively regular occurrence for many children but a cause for alarm for a boy who fears that any sickness could bring another meltdown like the one he experienced five years ago.
All told, Ms. Harris figures her family's medical bills have mounted to nearly $6 million over the past five years, most of it paid through UPMC insurance arranged through the state. Her co-pays add up, though, and she spends a lot of time making sure her kids get all the medical attention they need.
One silver lining for Ms. Harris is that she's learning sign language and hopes that she might make a new career of being an interpreter.
And the drug habit is long gone. There's no time and no money. And her kids need her too much.
They also could use some cheering up. The Pittsburgh Post-Gazette Goodfellows Toy Fund seeks to ensure that every child has a toy under the tree on Christmas morning.
Donations support the Marine Corps Toys for Tots program, which will distribute more than 100,000 toys to needy children this holiday season.
Please help. Make a tax-deductible donation to Goodfellows by using the coupon on this page, or make a donation online by visiting www.post-gazette.com/pgcharities.
Every donation will be acknowledged in the newspaper.
Goodfellows Toy Fund

