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.
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.
Thank you for this post. As both Brandy and baby Jaeli are very special people to so many (and to me) it is nice to know that there are so many who are willing to step in and help in this time of need. I’ve seen this kind of love and support before and know it exists. Thank you for reminding me.
You’re welcome. I know that it’s so important to Brandy that she knows how much we ARE out here cheering for her and encouraging her. She felt SO alone before.
This is a great story which I retweeted. I didn’t see the first tweet, but am glad to see the results. You go girl!~~Dee
Makes me wonder how many more Baby Jaelis out there need this kind of help, and how the power of social media can be harnessed to help them, too. It makes no sense to me that a mother would be put in this situation in the first place.
Brandy and I were talking about this the other day. Very few state insurance programs cover the milk bank milk. Milk banks need full funding and insurance companies need to reimburse them for the precious, life-giving milk they share with sick and needy babies.
But you’re right – It makes NO sense at all. They pay $4,000+ to keep her in the hospital monitored and guaging her reactions, but won’t pay $200 per day for the milk she tolerates so she can go home healthy and in peace? NO sense.
Seriously in tears, I’m so glad I could be a part of this and help this sweet baby and mother!
LOL! Try being pregnant and going through this! I alternate between bawling like a baby and fuming like a mother bear. My husband says I’m very scary. In a good way. 🙂
I love this story and how the Social Media World came together to championed this cause. Sometimes this big ol’ world is just a small village helping its neighbors.
Love this story of love.
Angela, Thank you for sharing this story. I will pass it on to some knowledgeable and resourceful people here in Asheville. @dulcitalove
Wonderful! Thanks for passing it on – the more we can spread the word, the better.
It is so nice to see social media get a good rap =) I have been praying for baby Jaeli for months and appreciate your efforts in supporting her mom and her nutrition.
Thanks for including me in your article! Go, Twitter!
Well, gosh, Angela…I blink and miss all this. It’s a perfect example of using personal voice and influence for good…in this instance to save a precious little life! How brilliant of you to *think* of getting the word out via social media; how inspiring that so many rallied together to make it happen.
Thanks for using your voice to ripple through thousands of people and giving Baby Jaeli an amazing story to share the rest of her life. I’m touched :).
xo
I’ve known Brandy since we met at a writer’s conference – just before she found out she was pregnant with Jaeli. I feel like I’ve followed this pregnancy and this baby every step of the way. I had to DO something. But all I did was speak up – everyone else STEPPED UP and in a huge way. Thanks for spreading the word.
Blessings,
Angela <
I sent a message to abcnews.com about this story with a link to this post. Maybe if we can get a major network to help we can get Jaeli all the help she needs!
I agree – I think it’s totally a newsworthy piece! 🙂 I’ve emailed a few of the stations and DM’d the newspapers following me.
I honestly think it’s a matter of who will run this FIRST, not whether it will run or not.
Thank you for reaching out to the news outlets! It can only help – you’re right.
Angela <
Fantastic! I’m just hearing about this now – so proud of what our community of online Moms is capable of doing to make a difference! Thanks for your hard work to make this happen.
The truth of the matter is that as individuals, we may fail, but when we band together to accomplish something, there is *nothing* we cannot do! Social media just makes it easier. 🙂
And also: We’ll keep plugging away at this thing until the sponsorship is 100% or Jaeli goes to preschool. 😀
Amazing work, Angela. And you are right…social media rules again. I think Andi has it right as well. There are always people willing to help. Social media just makes it easier.
Have you thought about setting up a Facebook cause? Didn’t see one so I built one. But we have to select a nonprofit for people to be able to donate. For now, I am sending them from the Facebook cause to your Jaeli page, Angela.
Facebook Cause for Jaeli: http://apps.facebook.com/causes/371658?m=618c3fb4
Great idea, Justin! Thanks for thinking of it! I’m still wrapping my head around how quickly this has evolved on Jaeli’s behalf. Blessings, Angela <><
This shouldn’t be needed. This is why the heathcare needs to be free. Higher taxes or whatever else is WORTH it so countless other people are denied and left to die because medicaid doesn’t cover something. It’s SICKENING! They would let the baby die!? How cruel and greedy the system is!
When all of God’s people pull together, we begain to see miracles. God has big plans for this little girl. She is going to touch many lives. God Bless Jaeli and her family.
I am a mother with five disabled children and I lost one daughter to a seizure disorder. God uses the meek to further His Kingdom.B
Wow. Just wow.
Bless baby Jaeli, and all those who have helped her.
I’m pleased to hear the tweets everyone sent helped to bring the networking community together to help this sweet baby and her mom. I hope the donations continue to come in as the support and help is needed. Do you know how much longer she will be in the hospital and if this syndrome is something she will overcome? Thanks for sharing the DM and tweets with me Angela!
Angela – what an amazing thing you have started!! With a little faith in Social Media and the hearts of the people on here- you have saved a little girl.
Thank you for sharing this story – and letting all of us know the power of our networks.
Much love and prayers for Baby Jaeli and her family!
Just posted this on my Facebook status and am praying that little Jaeli will get what she needs for as long as she needs it. The internet is doing something good for a change 🙂
That’s amazing and wonderful. We bloggers and social media addicts can really stick and work together to support our “extended” families.
It just goes to show how one person standing up for whats right can create a miracle and how todays social media is and can be used for good.
The Parable of the Good Samaritan
25On one occasion an expert in the law stood up to test Jesus. “Teacher,” he asked, “what must I do to inherit eternal life?”
26″What is written in the Law?” he replied. “How do you read it?”
27He answered: ” ‘Love the Lord your God with all your heart and with all your soul and with all your strength and with all your mind'[c]; and, ‘Love your neighbor as yourself.'[d]”
28″You have answered correctly,” Jesus replied. “Do this and you will live.”
29But he wanted to justify himself, so he asked Jesus, “And who is my neighbor?”
30In reply Jesus said: “A man was going down from Jerusalem to Jericho, when he fell into the hands of robbers. They stripped him of his clothes, beat him and went away, leaving him half dead. 31A priest happened to be going down the same road, and when he saw the man, he passed by on the other side. 32So too, a Levite, when he came to the place and saw him, passed by on the other side. 33But a Samaritan, as he traveled, came where the man was; and when he saw him, he took pity on him. 34He went to him and bandaged his wounds, pouring on oil and wine. Then he put the man on his own donkey, took him to an inn and took care of him. 35The next day he took out two silver coins[e] and gave them to the innkeeper. ‘Look after him,’ he said, ‘and when I return, I will reimburse you for any extra expense you may have.’
36″Which of these three do you think was a neighbor to the man who fell into the hands of robbers?”
37The expert in the law replied, “The one who had mercy on him.”
Jesus told him, “Go and do likewise.”
Angela, You’re such a life saver!