By now, you are likely one of the thousands who have been following Jaeli's story either on
Angela's site or on one of the sites (AOL, Reuters,
Type-A-Mom or any number of others, even in
Spanish!) that have spread like wildfire over the internet in the past few weeks. If not, the brief summary is this:
Jaeli is sick. Only three other human beings have this level of chromosome disorder. As such, she has many health problems, one of which that she is about five months old and weighs less than ten pounds. Her ultra-sensitive body has only tolerated breastmilk without serious "side effects"- or reactions, depending on how you'd like to define it. Unfortunately, high calorie breastmilk is not easy to come by, especially when State Medicaid refuses to cover it. (
Apparently, government efficiency deems it better to pay for hospitalization, round-the-clock care and response to reactions side effects than to just purchase breastmilk...but, I digress)
After a series of trials of both the literal and figurative sort, Jaeli was sent home with a prescription of two doses Neocate, in spite of Jaeli's response to it, to one dose high calorie breastmilk. The benefits of a mother's milk for this little one cannot be ignored. Since that time, even this prescription has been questioned.
The only substance on earth that does not cause this child pain is the only substance that powerful entities will not provide.
As concern spread that Jaeli would not have access to the $4.25/oz breastmilk that required up-front payment, people started to come forth. At first, we looked for a Medicaid exemption long-term and corporations to sponsor Jaeli short-term. After all, they can do more than any individual could possibly imagine, right?
Wrong.
The majority of requests went out to Nestle. As 70,000+ people were reached via Twitter in a matter of days, Nestle's twitter account and email account were flooded, as well. They have had some bad publicity lately, and a large segement of the population has
boycotted them for some time. What better way to turn the tides than to openly back the claim that "breast is best"?
While Nestle remained silent, the
people gave.
Some only had enough for an ounce- $4.25. Others decided to give Jaeli nourishment than spend hat $20 on a pizza. Still others came forward with more. Hundreds of individual donations poured in, and
within forty-eight hours, Jaeli had milk for a week.
While Nestle contemplated, the
people shared.
Jaeli's story spread all over the internet. A Facebook Cause was opened, Jaeli's Syndrom, and it quickly garnered over $1000 in donations, and the number continues growing. The single corporate influence in this to this point has been a donation of a pump and lactation consultant by Medela so that Jaeli's mom can work to increase her own milk supply. All other efforts were put forth by individuals. Everyone is talking about Jaeli. Even an
up and coming artist is donating proceeds to Jaeli's cause.
Today,
Nestle responded.
You might've received an email similar to this at about 3 PM EST:
I have been following the information about Jaeli and her sensitive condition. We hear from many parents about special situations and we treat each request with great concern and attention. I understand your request for our support in providing what Jaeli's parent(s) believe to be best for their baby. We empathize with the situation but need to respect the professional recommendation of Jaeli’s doctors who are closest to the situation and must have her best interest at heart. Our thoughts are with Jaeli and her family.
While I will spare you my general disdain for corporations and the medical "industry" as a partnering whole, I am sure that you feel the same condescension and callousness that I did when this hit my inbox. The implication is that the parents have blown this out of proportion; that they believe one thing to be the best when the medical community says another. Doctor knows best.
Nestle, with flippant ignorance, blindly assumes that a medical professional would not prescribe breastmilk (however "best" it may be), and if they did do so, that there should be no problem attaining it. They miss the fact that
it was prescribed. They dismiss the fact that
it has been given to her both on and off hospital premises. They conveniently ignore the fact that
breastmilk is saving this little girl's life.
Imagine that.
God-given sustenance over corporate-created synthetics.
And now, while Nestle disregards anyone who questions an imitation, I say we disregard Nestle. As I type this,
Jaeli's account at the Ohio Milk Bank is increasing by more than $16,000. Individuals who see, individuals who care, individuals who sacrificially gave of their budget so that sacrificially given milk would make it to Jaeli's delicate little body.
This is Jaeli's story.
Sadly, Jaeli's story is not the only tragedy. Milk banks see this kind of dilemma every day. When a child is hurting, corporations and government bodies are not the be all end all solution. Many times, they don't even take note.
Jaeli's story speaks to the need for awareness and support of milk banks, but
it shouts from the rooftops the need for and power of outreached arms. It is people reaching out to people who make the difference. Who is the Jaeli in your life? Who is reaching out for help while the powers that be brush them away?