Wyatt Moore is a 9-year-old living with MECP2 Duplication Syndrome, a rare, crippling neurological disorder. His mom, Amy, is fighting to find a cure.
A few Lake Highlands neighbors wanted a mother to stop posting about her terminally ill child, so they had her Nextdoor.com account suspended.
This is a tale of a contemporary issue, but also an age-old one: Neighbors complaining about neighbors in a fashion some might describe as petty and even mean-spirited.
Former councilman Jerry Allen minced no words back when one neighbor complained about a beloved Little Free Library and started a whole LFL code-enforcement maelstrom: “Unfortunately, people see things in different ways, and citizens complain about other citizens all the time,” he said, adding that folks frequently use city code/the written laws of our little slice of land to punish a person who does something to irritate them.
What happened to Lake Highlands resident Amy Moore is the digital version of that sort of thing, you might say; the land is Nextdoor.com, Lake Highlands, and the code/law of the land is the social networking site’s Community Guidelines.
In my years at the Advocate I have written too many times about neighborhood parents dealing with the unthinkable — sick, terminally ill children. One such family is that of Wyatt Moore, a 9-year-old living with MECP2 Duplication Syndrome, a rare, crippling neurological disorder that occurs almost exclusively in boys.
Wyatt and his brother Max are in bed with a giant Squirtle, which is one of the raffle items at the upcoming fundraiser.
Wyatt’s parents, Amy and Jason Moore, planned a fundraising event for the 401Project, a parent-run organization aiming to find a treatment for MECP2 Duplication Syndrome. (It takes place next Tuesday, Nov. 15, at Neighbor’s Casual Kitchen, 9661 Audelia.)
Since before we first told this family’s story in 2012, Amy has been advocating like crazy to help her son, now confined to a wheelchair, so it’s no surprise that once she painstakingly organized this fundraising event, she set about getting the word out in every way imaginable, so all that work all the participants put in would not be wasted, she explains, so she could meet the fundraising goal and find a cure for Wyatt and boys like him.
She used the tool that works so well, though not without hitches, for many grassroots fund- and awareness-raising efforts: social media.
She created an event on Facebook, which has been shared all over the place, which made its way to us, which prompted us to write about it on this very site. And she posted the event on Nextdoor.com.
She first created a calendar event on Oct. 16, a month before the event is to take place. She received dozens of “Thank Yous” (Nextdoor’s version of “likes” on Facebook) and donations too.
Warmed by the support, and hoping to reach as many people as possible in the month leading to the event, she continued to post updates about Wyatt’s condition — on Halloween, for instance, he nearly died from treatment-related complications, so she shared the experience with her neighbors on Nextdoor.
As items were donated to a silent auction, which would be part of the November fundraiser, she shared those updates there as well. Again, most of the group sent well wishes, donations and RSVPs to the upcoming event.
She was careful to not post the same thing repeatedly, which would violate Nextdoor’s guidelines.
“Once a day, in the late evening, I would post some kind of fact regarding the syndrome, or a photo of another affected child from somewhere around the globe, or a bio on Wyatt, or the raffle packages available.”
Nextdoor, like Facebook, makes it simple to turn off or “mute” notifications from any member, so members could easily choose to altogether ignore Amy once they had seen their fill of her updates.
Then she received a note from a Nextdoor “lead” for the Lake Highlands community, asking her to place her posts in a separate, more private “group.”
According to Nextdoor.com, “Neighborhoods Leads do not work for Nextdoor and are not compensated in any way. They are simply neighbors like other members, who have been granted additional capabilities to help their neighborhood run more smoothly.”
This lead (we won’t name any names here other than those from whom we’ve received permission because Nextdoor communities are private), very politely, suggested that Amy start a group where she could share information about Wyatt and the event with a smaller niche of people who are interested in what she has to say; that would be “a more appropriate place for your posts at this time,” the lead wrote, in a note that was shared with the Advocate.
Another neighbor advised Amy to continue posting in the general feed — you can stop posting once you meet your goal or cure Wyatt, he told her. After all, he reminded her, anyone who doesn’t want to see posts from you can mute you.
She agreed.
“Doesn’t that defeat the purpose of a fundraiser? I was trying to touch people that didn’t already know about and support Wyatt … My intention was to soften a few hearts and get them interested in helping. But how could that ever happen if they never joined my ‘group’ in the first place?”
So she kept posting in the general feed.
And then this message appeared on the board from a resident of Lake Highlands Estates:
“… there is a member who is posting a beyond reasonable amount of posts about her child. I’m getting multiple posts on my phone every time she adds a new request for funds. It has gotten to the point that I’m considering dropping out of this site because of this …”
Another member wrote to Amy in a message that Nextdoor was a place for “lost animals, traffic issues, burglaries, even squirrel sightings — yeah, these are more what Nextdoor was intended for. Not a day-to-day chronicle of what is obviously a very difficult and challenging road for you.”
Others stuck up for her, like this Skillman/Royal resident:
“… so anyone can post about a lost cat or dog and she can’t post about her sick child?? Who cares if she posts about this, SHE SHOULD, anywhere she can. People who obviously have nothing better to do are actually stooping this low to police a post about a child in need? Get a grip and check yourself. Nextdoor is not the Boy Scouts, it’s not the PTA, it’s not church, it’s not the government, it’s a social media website and to heck with the ‘proper forum’, KEEP POSTING AMY!”
Still, on Nov. 9, she received a warning:
“A message you posted was reported by another Nextdoor member as violating Nextdoor’s Community Guideline: Promote business and commerce the right way … Your neighborhood leads have been asked to review whether your message complies with the Guidelines. Messages that violate the Guidelines will be removed.”
Amy’s posts did not relate to “Promote business and commerce the right way.” There also are “Fundraising” guidelines, to which Amy’s posts adhered, however she was later suspended under the “over-posting” guideline.
“Over-posting means repeatedly posting about the same topic, or about your business or item for sale, in a way that annoys your neighbors,” according to Nextdoor guidelines.
As evidenced in the discussion above, annoyance is subjective. However the idea that some of her neighbors were annoyed by her posts about Wyatt shocked her, she says, as it did many other neighborhood parents who relate to and support her fight for her child’s life.
“Someone is tired of seeing pictures of my dying kid and friends dying kids and hearing about what real life looks like for us?” she laments.
Though hurt and frustrated, she waited five days before posting another update about the event, which takes place early next week.
“I hadn’t posted anything for five days or so, and I made one mention: ‘see the Facebook page for info on the upcoming event.’ I didn’t include any photos or gobs of info, just a link to more info,” she says, “and, bam, no more access.”
Her account was disabled. And worse, she says, the event was altogether removed from the Nextdoor.com neighborhood calendar.
“I don’t get it,” she says.
Amy received the note Nov. 9, six days before the 401project fundraiser, notifying her that her Nextdoor account had been suspended for “violating community guidelines on over-posting.”
The message was from David (no last name given), a Nextdoor employee, who she says told her that her suspension was enforced at the request of the three “leads” in her neighborhood Nextdoor group, in other words, three of her real-life neighbors.
David added that if she would “agree to follow the guidelines each time you post, we can discuss reinstating your account access.”
Amy replied that she would comply with all guidelines if he would please reinstate.
I’ve sent a message to Nextdoor via the press inquiry submission page requesting to chat about this case and the status of Amy Moore’s membership. I will update this post if I hear back.
Meanwhile, don’t forget about that Wyatt’s Waiting Wish fundraiser Tuesday and to keep up with Wyatt’s progress at the Wyatt’s Waiting Wish Facebook page.
Updated: As of Saturday morning, Amy’s Nextdoor.com privileges have been restored and the event is back on the calendar. She says despite this bit of negativity, she is happy to report that so far the foundation has raised $10,000, “and we haven’t even had the actual event yet.” She adds that raffle tickets and auction items are still available through Friday.
