Social networking saviors: Twitter, Facebook used in effort to help save a baby's life
Filed under: Kids and Money, Technology, Health
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.
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.
Gina Roberts-Grey is a freelance writer specializing in consumer issues.



Reader Comments (Page 1 of 14)
10-28-2009 @ 6:38AM
mimi said...
Bett....you are disgusting using this forum to market your weight-loss product. Why don't you offer to send a contribution to the family whose daughter would love for her to gain weight? You are repulsive!
Reply
10-28-2009 @ 8:34AM
Leah said...
Umm Mimi, that isn't a person. It's a bot that posted that. They post randomly on threads hoping for some idiot to click on it.
10-28-2009 @ 9:33AM
tina said...
i hope yeahs daughter gets better.
10-28-2009 @ 6:55AM
soytuya054 said...
They can afford to have SEVEN kids but not a special baby formula ???? Something wrong with that picture.
Reply
10-28-2009 @ 7:14AM
Angela said...
Yes, every parent should plan on having a special needs child who will require $150 a day worth of special formula. How dare people expect to have healthy children.
Once again, judgmental jerks will come out who have no children and no clue as to what they are talking about.
10-28-2009 @ 7:24AM
Michelle Sherritt said...
Are you kidding? I am carrying my 7th baby right now and I can tell you first hand it is just not that simple. Nobody AFFORDS to raise that many kids. But, somehow with love and Gods good grace we make it. If it were not for WIC I would not be able to afford normal formula let alone the special kind.
10-28-2009 @ 7:40AM
JP said...
Because all your money is going to pay for 7 kids. Duh.
Besides, can you afford 120+ per day? I sure can't and I have NO kids and a decent job.
10-28-2009 @ 8:10AM
Leah said...
Michelle you are an absolute disgrace to our already over populated Earth. You are on your 7th kid and rely on WIC to feed you all? Did you ever hear of birth control? I'm sorry but I am SICK of working my ass off EVERY DAY, I work 80 hours a week to support my 3 children and I have to pay ever growing TAXES to feed your kids. Did you stop to think where the money comes from? It doesn't just appear there, what you are doing is extremely selfish. Then time comes those kids have to go to college, where is THAT money coming from? You definitely couldn't buy them food, so I doubt you saved money for their college. Ohh I guess good ole hard working people will have to pay for that too. Word of advice, adoption, condoms, legs closed. End of story.
10-28-2009 @ 8:23AM
rick said...
ditto!
10-28-2009 @ 8:24AM
Billie said...
I couldn't have said it better, Leah! I am also tired of paying for these women who don't understand what causes this "pregnancy thing". It is called birth control, ladies. People who work don't want to pay for your seven children when we are struggling and working our asses off to support our 2 or 3. GET A JOB OR STOP HAVING SO MANY KIDS!!!!
10-28-2009 @ 8:39AM
k said...
Michelle Sherritt, I know that everyone has the right to make the choice to have children, and even when you aren't planning a child, things sometimes happen. And, as you said, some children are born with unexpected issues/problems that drain the family finances.
I do not know how you have come to have such a large family, but I hope that you try to limit having children in the future if you cannot afford to meet the basic physical needs of the ones you already have.
Because I do not know your personal situation, I am not necessarily directing the following comments at you personally. Overall, however, I find it disturbing that some people continue to have large families when they can't afford them. It is especially disturbing when free/low cost birth control is available in most places for lower-income families.
Most people, myself included, can barely afford to the cost of living in this tanked economy. Yet upwards 25% of my income is going to taxes, which are then being used to support other families. There is simply something not fair about that.
Everyone has the right to make a choice, but with those choices come personal responsibility. I am more than happy to give a helping hand to people who need temporary help - that is what WIC and TRANSITIONAL assistance is for. However, it is simply unfair to expect taxpayers to help for years on end as one has one child after another.
10-28-2009 @ 9:08AM
Michelle said...
People always judge other people that have a large family, you can afford to feed them if they eat a regular diet. Unlike this baby, she can't even take formula. So think before you post because you do not know the situation this family is in. The insurance will not pay for what she needs to stay alive.
For the family I pray that your family gets the help you need so your baby can live a healthy life.
10-28-2009 @ 8:53AM
Jessica said...
Wow, You're kidding me rite. Did it ever occur to you that they have seven children and take care of them to the best way they can, and when things are tough they ask for help, its not for pitty or to scam people it's to help thier child. And even if they don't have the money do you? And are they one of those parents that are on the news because they didn't care for one of thier children, or did you hear that they killed one of thier children. NO!!!!!!!!!!! You didn't. so stop judging and help. And unless you have a life like this one shut your mouth and do something good.
Just something for you to think about.
10-28-2009 @ 8:58AM
Noelle said...
That's what I was thinking. Although I feel really bad for the girl.
10-28-2009 @ 9:06AM
Stef said...
Michelle,
You're on WIC (which the rest of us pay for out of our taxes) and you're carrying your 7th child?? Stop bleeding the system and start using birth control you pig! Either that or stop spreading your legs.....
10-28-2009 @ 9:58AM
Tom Dennison said...
For soytuya054 - Give them a break. Nothing is "wrong with this picture". Why are so many so quick to jump in with 2 big judgmental feet when you do not know the facts. I have 5 kids. I can support them on $2500/month. If you read the article carefully you will see that they $1300 bought them 2 weeks of formula. That means $2600/ month. That is double what my entire family needs. How could anyone anticipate that happening. I have a friend w/ 7 kids. He makes a little more than I do and supports them just fine. How many people with 2 kids if they were suddenly socked with a $2600/ month extra medical bill could afford it? You don't know how he supports his 7 kids either. maybe they have a lifestyle that does it fine without a big cash flow. Think before you attack. Please. I am seeing this growing nastiness toward big families on these threads, like you have to be a millionaire to have a big family. You know why most people have have big families (I know lots of big families)? They love kids. Big time. Now there's a trend we need to denigrate and put a stop to.
10-28-2009 @ 10:17AM
k said...
Tom Dennison, I applaud you for caring for your family. I think that many of us are simply responding to Michelle's comment about having 7 children while being on WIC. Again, I think that WIC is a wonderful and necessary program, but it (like all forms of public assistance) is meant to be a temporary solution to help a family through a rough financial patch until they can recover. It is not meant to be a long-term or multi-generational solution to the growing problem of poverty in this country.
I agree with you that it can be a blessing to have a large family, but each one of us must really calculate the costs financially and emotionally to make sure that we have the means to support multiple children in all facets of their lives. People like you and your friend are excellent examples of how large families can, and do work. And I would be more than happy to see my tax dollars go to help you if you are ever in a pinch and need help for a while. However, I get upset by the growing number of people who have many children but do not plan - they either don't know or don't care that they cannot afford to even meet a child's basic needs before they become pregnant. It is not fair to the children or to society, who both ulitimately pay huge prices for the parents' irresponsibility and selfishness.
Also, my heart goes out to this wonderful family mentioned in the article. I hope that Jaeli grows up to be a healthy, happy person. I also hope that the milk bank sees the potential of some positive PR here and donates some milk to this little miracle!
10-28-2009 @ 10:21AM
Bee said...
What is wrong with the picture is the doctor's withholding their approval for the baby to get the food she needs just so they can EXPERIMENT with other solutions.
Who gives them the right to withhold food so they can experiment????
10-28-2009 @ 10:50AM
Don said...
Yea it's called a sick child where an insurance company won't pay as usual...you can have 1 or 4 or 7 a sick child adds financial woes that's what's wrong with this picture...do you have children????
10-28-2009 @ 11:13AM
rebecca said...
I am wondering if you have children? That was not a nice thing to say; I don't think any parent prays for a sick child, and they didn't know this child was going to be so medically needy.The milk for this baby is about $3,000/month that's $36,000/ year. Most folks in the USA dont make $36,000/year. I could see if they had 7 kids and were living the high life with fancy cars etc. No, they are not they need special milk for their baby. As a nurse, I truly do not understand insurance companies and why they constantly deny folks who really have medical needs.