Jaeli's Syndrome: Social Media Miracle Saves Baby

Donna Diegel's picture

The power of social media comes through again. Baby #Jaeli of Vermont, has a rare chromosomal disorder and is waiting for a miracle to happen. Bloggers, friends and corporations are Tweeting to raise funds for Baby Jaeli's milk. Will Jaeli get it in time?

If ever there was a miracle baby, Jaeli is it. Four month old Jaeli suffers with a rare chromosomal disorder, recently called "Jaeli’s Syndrome" by social media professional, Angela England.

That's not the real name for what Jaeli has. This disorder is so rare, there's no name for it as yet. Jaeli is only one of four in the country known to have "Jaeli’s Syndrome". England came up with "Jaeli’s Syndrome" to make it easier to remember.

Brandy, Jaeli's frantic mother, emailed Angela England in a moment of hopelessness, not wanting to watch her baby starve. This was unacceptable to England who believed the power of social media could make a difference in this little baby's life. It worked. 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.

However, the donor breastmilk was running out. The other private donor didn’t have any milk to send. The hospital refused to order any milk from the milk bank, since it wasn’t covered by the Vermont State Medicaid. Hopeless situation? Not when it comes to bloggers and Tweeters.

Within an hour of England's personal post to her own website, there were over 30 retweets reaching over 70,000 people. A few hours later, over 60 donations were raised, enough to call the Milk Bank to order Jaeli's milk. England says of her call to Brandy, “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.”

By the 48-hour mark, every milk bank in the HMBANA network was aware of Jaeli’s unique condition and working on her behalf. They're still
waiting to hear from Nestle, Gerber and other companies contacted about Jaeli’s situation.

Baby Jaeli even has her own Twitter Hash Tag. Just go to Twitter, enter #Jaeli, and watch the page light up.

At this point, you're probably wondering why the baby's mother got in touch with Angela. In addition to her various freelancing jobs, Angela England is a Pregnancy editor, Labor Support Doula and Childbirth Educator.

England says, "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."

An Exclusive Interview with Angela England

HULIQ Reporter Donna Diegel: Angela, you've taken a very "social" interest in baby Jaeli. What makes this case with Jaeli so personal for you?

Angela England: I met Brandy at a writing conference many months ago and we connected as mothers on many levels. I came from a large family, and now, expecting Blessing #4 have a larger-than-average family myself. Soon after we met Brandy announced her pregnancy with Jaeli, so I feel like I've followed this from the very beginning. When Brandy emailed her update last Tuesday and sounded so HOPELESS, it really sparked a momma-bear anger in me (my husband blames pregnancy hormones) that moved me to action. All I did was put the word out and people from around the world have pitched in, contributed, and helped to spread the word, contact potential sponsors, etc.

HULIQ: I'm calling little Jaeli a "Social Media Miracle Baby." What do you think about that?

England: I love it! Will definitely get some headline read. :-)

HULIQ: Has Oprah called yet? The Today Show? Good Morning America? What can BIG media do for Jaeli to help spread the word?

England: The Today Show followed me on Twitter, and Kathy Ireland did tweet out the Social Media story I posted on angengland.com so word is beginning to spread. So far, no major news outlet has run it, although I understand from a Twitter contact today that an AP connection is pitching the idea for this story this morning. I think that big media exposure will do a number of things: 1) Remind Medicaid of the time-sensitive nature of this issue. Thankfully Senator Leahy's office has been helping to get Brandy in touch with a real human being at the Health Advocate Office in Vermont so she now has an advocate. But it could take 4-8 weeks to even get a determination about the exemption application if they decide not to expedite this case. Large public attention can only help increase the speed of their decision. 2)Raise awareness of the need for milk bank funding in general.

HULIQ: How many sponsors does baby Jaeli need to get through this, and have you had any commitments yet?

England: The number of sponsors needed depends on what they would be able to contribute. So far over 75 sponsors have contributed an average of about $30 each! :-) However, the high calorie milk bank milk costs $4.25 an ounce and right now the doctors want her to get 30 ounces per day through her scheduled GTube feedings. The costs, as you can tell, add up. A corporate sponsor will to donate to the non-profit Mother's Milk Bank of Ohio on Jaeli's behalf, would be a wonderful boon to Brandy. We still have no assurances that Medicaid will even LOOK at her claim before the current store runs out, never mind rule favorably for her.

HULIQ: Where do we go from here with Jaeli?

England: It feels very much like a waiting game right now. We've planted the seeds with corporate sponsors. We've secured enough milk for the next month. We've put a bit of pressure on Medicaid and the Health Advocate Office so that Brandy is assigned a case worker now (whereas when she first called, she was not getting her phone calls returned). We've got a contact in Senator Leahy's office, a case worker, who has taken a personal interest in the case. Something will break in Jaeli's favor, it's just a matter of what gives first. Like I said on my blog - we KNOW we have enough milk for October, and maybe the first week of November. "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"

HULIQ: Any last suggestions, prayers, hopes?

England: Jaeli's biggest need right now is to GROW. She needs to gain weight. The average baby gains about 30 grams per day. Jaeli has gained only 3 pounds in 4 months and when she has reactions to certain supplements her condition worsens in that she actually LOSES weight - far more severe than just not gaining well. Pray for weight gain. Pray for protection against infections. Pray for a speedy resolution to the question on "What will happen in November?" so Brandy will be less stressed, and more able to focus on her baby. The last thing she needs right now is to battle for the right to feed her daughter what she knows will not cause reactions. Pray for the entire family - for a construction worker's family, a major illness like this, and Jaeli's emergency birth in the middle of prime construction season, can be a huge financial strain.

For more information, go to Type-A Mom, Angela England.com, or call Mother's Milk Bank of Ohio at (614) 544-0810.

Written by Donna Diegel
Exclusive to HULIQ.com

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