"Jaxon Strong" - exposing the reality

in #life4 years ago

I am the founder and administrator of the Facebook group Jaxon Strong: The Reality Exposed. The Jaxon Strong Foundation is a private charitable trust that was granted 501(c)(3) status by the IRS in late March 2016. It was established by Brandon and Brittany Buell of Tavares FL, the parents of Jaxon Emmett Buell who, in September 2014, was born with an extremely rare neurological malformation called microhydranencephaly which affects the fetal development of the brain and skull. His family set up a GoFundMe account to help them cope with what they described as a "financial crisis," and the Buells took to social media to promote their fundraiser and Jaxon's "story."



A "financial crisis" becomes a cash windfall

Their initial campaign - intended to cover urgent medical expenses and to allow Brittany to quit her job and remain at home with Jaxon - reached its modest $35K goal almost immediately. They then doubled the goal to $70K and continued to solicit donations. Again the target was met within months, but the Buells refused to shut down the GoFundMe page, citing ongoing financial need...and eventually, when pressured by the public, promising to donate the excess funds to charity. (It was during this time, in March 2015, that they purchased their new-construction home in Tavares.) The final total on the Buells' GoFundMe page the day they closed was more than $176,000. To this day there is no concrete evidence that they have ever donated any money to charity at all, ever.



The Buells' plan B

Shortly after the GFM fundraiser ended, news began to circulate that Brandon - who had previously been employed as the assistant manager of a local bank - had also quit his job. Also around this time the Buells started dropping hints on their Facebook page, which by now had accumulated a rabid following of around 378,500, about an upcoming "exciting development!!" On April 27, 2016 the Buells officially announced the creation of the Jaxon Strong Foundation: a so-called charity which they described as "a not-for-profit organization that is ready to receive donations" (their website was initially entirely blank aside from a link to their online donations form). Many people raised questions regarding the Buells' plans for the donated funds, and the legality of the organization itself: there was no sign of a Jaxon Strong Foundation anywhere on the IRS or Florida Department of Consumer Services websites.

Instead of clarifying - as one would expect of a legitimate charity - Brandon and Brittany began systematically deleting not only all questions on their Facebook page, but banning the commenters altogether. In light of their increasingly deceptive conduct and realizing that a large-scale scam was potentially in the works, I organized several other individuals into a private, vetted G+ taskforce (since the Buells' followers have a history of harassing and even stalking any outspoken critics). We began investigating the statutory approval of the Foundation and found that the Buells were NOT authorized to solicit charitable donations well past May 16th, and in fact had never even bothered to file the application in the first place until April 28th - the day AFTER they announced that the Foundation was "ready to receive donations" and the day that they (and many of their fans) berated us for questioning the legality of their organization. 


Jaxon Strong followers tried stalking several of our personal accounts in an (unsuccessfu) attempt to have us banned or suspended from FB...this was pretty typical


Eventually the Buells found a legal loophole through which they were able to justify this extended lapse in statutory approval: they structured the Foundation as a "private trust," which allowed them to backdate their IRS approval retroactively to the date of the trust's establishment in late March - well before the public announcement in April. As a private trust the Buells also have the option to pay the trustees - i.e. themselves - a salary. Their IRS application, which is available to view publicly, indicates that they intend to do just that: when asked on the application if the trustees will receive "compensation," the Buells have checked "YES." (Questions about what that compensation would entail are deleted by Brandon and Brittany, and the commenters banned.)

After this seemingly endless series of major red flags, the outcry was such that the Reality Exposed page was born...but it has existed in spirit for much longer. The Buells' actions over the past 21 months have raised such significant concerns, affecting everyone from potential Foundation donors to mothers of other special needs children - some of whom ultimately lost those children to similar diagnoses - that it became clear these issues needed to be addressed in a coordinated fashion. Particularly since the Buells have silenced so many individuals in their attempts to hone their PR image online.

Some of the more troubling issues include:

— their scornful, disrespectful attitude towards the medical profession (except in the few instances when doctors "are fascinated by Jaxon" or otherwise validate them and their beliefs) and their frequent assertions that doctors "don't know everything" and "get it wrong a lot" despite the fact that it is largely the work of talented medical professionals that has given them 21 precious months with their son (and counting);

— their use of donated funds to travel to and participate in anti-choice lobbying events in Washington DC, despite having stated that they "considered termination" as an option themselves (over the past several weeks, Brandon has been making the rounds advertising the Foundation and likely soliciting some generous benefactors in various pro-life lobbying circles - the Family Research Council's ProLifeCon and staunch anti-abortion Congressman Daniel Webster, both in the same week - despite the strict prohibition on tax-exempt 501(c)(3) charities "contributing to political campaigns" or "attempting to influence legislation");

— the way they market their medically fragile son as a "brand" - complete with his own logo, coordinated colors, and even a carefully trademarked (yes, they trademarked it) name/slogan - with the ultimate goal of generating revenue and pursuing their odd version of fame...forcing him to endure the lifestyle of a media sensation and an ideological figurehead though he suffers from almost continuous seizures and is often heavily medicated during his scripted, on-camera appearances;

— the fact that they knowingly misrepresent his abilities and exaggerate his "milestones," particularly in the press, in a way that is beyond natural proud-parent behavior...they reinforce the narrative that he is "practically normal" by asserting misleadingly that he is hitting neurotypical milestones despite statements from actual neurobiologists that this is neurologically "highly unlikely, bordering on the impossible"...in doing so they ultimately lead other women, who may be faced with pregnancies where the fetus has been diagnosed with the same condition, to make life-altering decisions based partially on erroneous information (not to mention the Buells' ludicrous "celebrity" status which is entirely based on their son's catastrophic disability).


A screenshot of Jaxon's MRI


"The doctors don't know everything" (except when they're good PR)

What many of our 120+ active members find most disturbing about the Buells' social media campaign is their coordinated effort to market Jaxon, primarily to the deeply religious pro-life female demographic which is their target audience, as a "miracle baby" whose supposed milestones far surpass both existing medical evidence and his own neurologists' observations. As a couple who claims to want to "spread awareness" about their son's condition, they willfully misrepresent Jaxon's abilities, overstate his progress and distort basic scientific fact in order to generate more notoriety and encourage donations by their fanbase. The Buells went on several television news networks back in December 2015 claiming that Jaxon was "walking and talking," despite the fact that he lacks almost the entirety of his cerebral cortex, including the language and gross motor control centers.



Multiple neurologists have asserted that this is highly, highly unlikely if not outright impossible. Jaxon suffers from a rare cephalic condition, one of many in a class of disorders known as neural tube defects that affect the formation of the brain and spinal cord in the very first weeks of fetal development. Microhydranencephaly results in a markedly smaller brain with drastically reduced cortical and cerebellar function. Though his parents have never shared a detailed MRI of his brain to their Facebook page, neurologists have described Jaxon's existing cerebral cortex as "a thin white line." If he were indeed forming words it would be astonishing, since the language centers of the brain - Broca's area and Wernicke's area - are located squarely in the part of the cerebral cortex which Jaxon is missing. Because his brain lacks these components which control the acquisition and development of speech, it would seem that he has no fundamental way of forming the raw sensory data of sound into meaningful structures like words.


 


The lights are on, but nobody's home

Jaxon also suffers from frequent tonic-clonic seizures, as well as myoclonic jerks which lately have become almost continuous. Though the Buells have uploaded a number of videos to their Facebook page in which they show themselves interacting with their son, we never see Brittany attending to Jaxon during one of his seizures or comforting him while he is in obvious distress. Instead, she is focused solely on arranging Jaxon in front of the camera like a marionette to ensure the most flattering angle and ideal lighting, propping him up with toys or against his padded chair (he cannot hold his head up independently). She applies makeup - foundation, mascara, even pink lipgloss - to improve his skin tone. We watch as Brittany has a plastic, singsongy, one-sided conversation with the camera while Jaxon cries and spasms in front of her, virtually ignored. "Do you like your ball pit buddy??" she asks rhetorically in one video, in which Jaxon can be seen buried almost up to the neck in a carefully-arranged mound of colored plastic balls - which, when he inevitably begins seizing, begin falling down around him. "Yeah, good job buddy, you moved those balls!" Jaxon's gaze is fixed, unresponsive; his pupils have the pinprick dilation characteristic of both heavy narcotic sedation and severe brain damage.



Of course, it seems natural that any parent might exaggerate their child's achievements every now and then, particularly with a special needs child. Who wouldn't? But the Buells aren't just any parents. They are parents who have earned close to $200,000 in under two years, subsidizing a comfortable upper middle-class lifestyle without either one of them being employed, largely based on their son's "miraculous progress." And the brand they have created around this phenomenon is so powerful that any comments that contradict this narrative are met with hostility, derision and outright rage. Their bizarre practice of deleting and banning all questions and alternative viewpoints, as well as the bullying of those posters by Jaxon Strong followers, has made their Facebook page into a sort of North Korea-like information-free, curiosity-free zone where the only comments that are allowed are heart emojis, blanket praise, and sanitized versions of "Jaxon's story" - the version that the Buells want you to hear.

The Foundation's own website is virtually blank aside from a few token links to the NIH, and a vague, evasive statement that "We move forward knowing that we are working with some of the top neurologists and medical facilities in the country." This could mean literally almost anything. There are hundreds of different projects and departments and experimental medicines and procedures being developed at Boston Children's. "Working with" - in what capacity? "Donating to" - to whom? A research project? A fundraiser? An event? The Buells have provided absolutely no specifics whatsoever regarding their plans to donate actual money to any specific charities, aside from their much-hyped fundraising team for the Boston Children's Hospital charity walk effort this June which raised a mere $1,855. In addition to the BCH walk, the sole charitable effort the Buells have made over the past two years has been to make tacos for a local Ronald McDonald House...which they used as an opportunity to advertise their new Jaxon Strong Foundation t-shirts (for sale!). Out of close to $200,000 that the Buells have received in cash, gifts and other services (free trips to Disneyworld, etc), they have given back less than $2K and about 50 tacos.

I encourage anyone who is moved by the issues raised above to visit our Facebook page; it is important to us that we reach as many people as possible - not to change minds by force, but just to provide the facts, the full set of facts which are unavailable on the Buells' page, so that people can arrive at their own decisions independently.

Sarah Riedel, on behalf of JS:RE