How Social Media Saved #Jaeli

Sound extreme? It really isn’t that extreme when you consider that within 24 hours of the first tweet going out, nearly 75 mothers, fathers and concerned citizens had donated enough coffee and pizza money to buy the milk Jaeli needed. The milk she wouldn’t have otherwise been able to have.

Baby Jaeli - one of only four known to have Jaeli's Syndrome.

Jaeli is a sweet, 4-month old baby girl I know personally, born with a rare chromosomal disorder that doesn’t even have a name—I call it Jaeli’s Syndrome. Only three other people in the entire US are known to have Jaeli’s Syndrome, but her’s is the story I worried about. Here’s the time-line breakdown of what has happened so far:

Tuesday morning (October 6th) I received an e-mail from Brandy, Jaeli’s mother. The donor breastmilk was running out and she just found out the other private donor she thought would be sending milk didn’t have any to send. The hospital refused to order any milk from the milk bank (which keeps a supply of donor milk on hand) since it wasn’t covered by the Vermont State Medicaid. Brandy’s options were 1-pay for the milk with cash she did not have after 4 months of intensive care for a sick baby or 2-be forced to feed Jaeli formula supplements she has shown SEVERE reactions to in the past. Or, as Brandy’s despondent e-mail said in a moment of hopelessness, watch her baby starve. Unacceptable to me!

By 2:30 pm that day I put up a Jaeli Page on my website describing what I knew of the situation, and the first tweet went out. Within one hour there were over 30 retweets reaching an audience of over 70,000.

20 hours later with nearly 3,000 hits to the page and over 60 individual donations, we’d raised enough money that I surprised Brandy with a phone call directly to the hospital where Jaeli is admitted and I told her, “Call the milk bank and order a week’s supply for Jaeli. Tell the hospital a bunch of mothers gave their coffee money to do, in 24 hours, what they couldn’t do for you in FOUR MONTHS.”

Since then we’ve doubled the amount of donations from private citizens, as well as been given a generous donation of one box of high-calorie milk from the Ohio milk bank — a donation which has been matched by two other milk banks from around the country. More than 75 individual donations came in from at least 8 different countries including India, Canada, Scotland, New Zealand, Australia, England and more.

Over six thousand people have come to the site, commented, e-mailed me directly, or are talking about this situation in a variety of chat boards, forums and, of course, on Twitter. Via our initial twitter efforts, which led to postings from others on many mothering websites, we’ve also been able to send donor agreement forms to over two dozen potential donors!

By the 48-hour mark, every milk bank in the HMBANA network was aware of Jaeli’s unique condition and working on her behalf. This is about the time someone (on Twitter of course) had the idea of a corporate sponsor to cover the cost of her feedings. Friends, family, twitterers and total strangers began emailing Nestle at nestlefamilyinfo@casupport.com and asking them to act on their stated support of babies by sponsoring Baby Jaeli’s feedings. This, again, is a contact made directly with Nestle via Twitter. We are still waiting to hear from Nestle, Gerber and other companies contacted about Jaeli’s situation.

By the 72-hour mark an online friend’s idea to call Senators and Representatives had various government agencies working on Jaeli’s behalf. Not only that — Baby Jaeli’s story has been read by a half-dozen news outlets. Over two dozen hospitals around the nation and several government agencies have become directly involved including the Vermont Health Advocate’s Office and Senator Leahy’s Office, to name two helpful agencies off hand. Both were contacted directly as a result of social media outreach…while potential donors and questions and e-mails continued to flood in.

We’ve all seen the blog-o-spere discussed in negative ways — people turning on each other and attacking one another. But here is a situation where the online community centered around a perfect little 8-pound baby and rallied on her behalf. My initial reaction of “Oh, no. You will NOT starve to death” was echoed by a thousand voices around the world. My initial reaction of raising enough to cover a week or two became an entire movement as idea after idea came pouring in. Let’s call Senators. Let’s e-mail Nestle. Let’s find a company to sponsor her. Let’s e-mail news outlets.

Apparently “Jaeli’s Syndrome” makes it easy to stick in people’s hearts as well. An entire community of online “advocates” have embraced a baby they’ve never met. Social media rules again — and this time the benefits are obvious and tangible. Especially for Baby Jaeli.

Where do we go from here? The doctors are completing their trials of what Jaeli will tolerate and grow on and should finish up this week. The current plan is to send Jaeli home on the milk bank milk in the high calorie formulation, because what this baby needs most is to GROW. We’ve secured and paid for enough of this milk to last through October, and thanks to donations trickling in yesterday, into November as well. After that – who knows? Either more donations will come in, medicaid will come through or large donors will step up. One thing IS for sure – this baby will have what she needs, one way or another.