Brandy and Jaeli

By Heather Cabot, The Well Mom

When a mom in rural Oklahoma learned that bureaucratic red tape potentially jeopardized  the fragile health of a special needs infant in Vermont, she got mad.

And then, she started Tweeting.

“It definitely riled up the mama bear in me. This could be anyone’s child. No one wants to see a mom with a sick child go through that alone,” says Angela England, who learned of the situation earlier this month in a disturbing email from the baby’s mom, Brandy Brow.

England was stunned to find out that Brow’s insurance would not cover the cost of the special high calorie breast milk that 4-month-old Jaeli needed to grow.  In a desperate email message, Brow told loved ones that she had only 2 and a half days left of a donated breast milk supply and with mounting hospital bills, she could not pump enough of her own nor afford the daily $85 cost to buy more from a private milk bank.  On October 6th, she wrote to loved ones on her Yahoo email group, RareChromoBaby,“I feel like taking her home (from the hospital) to die. It seems she is going there anyway.”

“I cried. I was sitting alone in Jaeli’s hospital room not knowing what to do. It was the worst time of my life and I was powerless to change anything,” Brow, a writer and mother of seven, says of the day she emailed friends and family with the news and a call for help and prayers.

She says she never dreamed that England, pregnant with her fourth child, would immediately launch a web campaign to help Jaeli.  Through a flurry of email, tweets, Facebook updates and blogging, her friend spread word of baby Jaeli’s situation. England’s digital megaphone reached 70,000 people in less than four hours and she managed to raise enough money to buy a week’s supply of breast milk for Jaeli from an Ohio breast milk bank.

“One person donated $4.50 on Paypal and said ‘I can only afford to buy Jaeli one ounce right now but I want to help,’” England says. “There was this feeling that none of us can make Jaeli grow and not be sick..but I think this gave people a way to take action.”

Little Jaeli suffers from a chromosome disorder so rare that her doctors don’t even have name for it.  One of the complications is that she is severely underweight and must receive extra nourishment through supplements of high calorie breast milk.  Brow says her daughter cannot tolerate the hypoallergenic formula NeoCate the hospital wanted to feed Jaeli.  She is now subsisting on a combination of the breast milk purchased with the contributions from around the world and the NeoCate and appears to be doing well.  Jaeli was discharged from Dartmouth-Hitchcock Medical Center in Hanover, NH on Monday.

In the two weeks since England launched her electronic campaign for Jaeli, she has doubled the amount of money raised from across the world to more than $3000 and has secured donations from three different breast milk banks.  She says more than 600 people emailed her to donate their own breast milk.  The generosity spread across the US and Canada and even extended to countries in Europe, Asia and Africa.

“I’m flabbergasted, humbled, grateful, relieved, thrilled. This is wondrous: It’s something that never can happen by trying to get it to happen, which makes it even more wondrous,” says Brow, who continues to keep people updated on Jaeli’s condition through Twitter @brandybrow.

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This entry was posted on Monday, October 19th, 2009 at 3:49 pm and is filed under well-meaning. You can follow any responses to this entry through the RSS 2.0 feed. Both comments and pings are currently closed.