Social networking is helping to save one very tiny baby's life.
Jaeli Brow came into the world last June with an extremely rare condition -- a chromosomal mutation that makes her incapable of tolerating most forms of nutrition, including most formula and breast milk, or to put on weight. For a tiny baby fighting to gain even a few precious ounces (Jaeli weighed just 5 pounds, 4 ounces when she was born), the condition can be life threatening.
Earlier this month, the situation grew even more dire when Jaeli's family found themselves struggling to afford the one type of milk that she can stomach. But thanks to donations from 60 or so perfect strangers who read about her on Facebook and Twitter, Jaeli has received some much-needed meals.
Jaeli's official diagnosis is referred to as unbalanced translocation between short arm of Xp and a duplication of 2q. The condition is so rare -- only three other children have been diagnosed with it -- that it doesn't even have a name yet. "[W]e call it Jaeli's Syndrome," says Angela England, a family friend who is helping Jaeli's family to raise money.
As if the condition isn't hard enough for the youngest of seven kids and her parents, Brandy and Jim, to cope with, Jaeli was also born with a host of health issues including a minor cleft palate and two large holes in her heart. Thanks to a combination of drug therapies, she has narrowly avoided open heart surgery.
But it's Jaeli's inability to tolerate formula, or even most breast milk, that is particularly daunting. Severe reactions to feedings often result in extreme vomiting and bleeding in Jaeli's nose and mouth. One of the only ways Jaeli can eat without such a violent reaction is to consume 24 calorie-per-ounce breast milk that comes from the Human Milk Banking Association of North America. The price tag: $4.25 per ounce. Considering that Jaeli currently needs about 30 ounces a day, it's an an expense that quickly adds up.
Yet, says England, since Jaeli's doctors want to continue to experiment with other, cheaper treatment plans, they refuse to categorize the high-calorie, pre-screened, banked breast milk as a necessity. As a result, the Brow's can't file an insurance claim to help pay for the milk. And since an insurer isn't helping to foot the bill, the hospital refuses to order the milk without "cash in hand."
Earlier this month, Jaeli was down to her final ounces of banked breast milk and losing weight. Desperately hoping to help her friends, England turned to social networking. On her Twitter page and a FaceBook page entitled "Jaeli's Syndrome" she started a campaign to collect donations for Jaeli's milk. "I just knew if other moms knew about the situation, they'd band together and get Jaeli food," she says.
Parents across the country started donating. "In a few hours, we collected over $1,300," she says. The initial effort was enough to keep Jaeli fed for about two weeks. To date, the group has raised more than $3,200 and The Mother's Milk Bank of Ohio has donated an extra box of banked milk, says England.
Last week, Jaeli returned home after a three-week stay in the hospital where she was treated for a urinary tract infection, along with numerous digestive and weight complications. Her parents, siblings and friends are hopeful she's turned a corner (according to her mother, Jaeli now weighs 9 pounds, 2 ounces), but are only cautiously optimistic. They're hoping surgery, growth and time will eventually allow Jaeli to eat solid foods, but her prognosis is uncertain.
For now, "Jaeli's Angels," the growing number of donors, "tweeps" and "friends" willing her to gain weight and thrive, have their sights set on keeping her in pre-screened breast milk until that happens. "I wish I could buy her several days worth myself," says England.
If you'd like to donate, follow Jaeli's progress, or spread the word, log onto Twitter and follow @angengland, @brandybrow and @rarechromobaby. Or, stop by her website.
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