Jennie's Dental Fund
(GoFundMe suggested that I tell you specifics, so to be clear, I'm a longtime friend of Jennie's, and mother to her godson.)
Jennie's been there for us through countless instances of need, or periods of difficulty in our lives. She always shows up to lend a hand, take care of a sick kid, offer her truck, hand you some cash, whatever's needed.
Now she's facing a severe difficulty of her own, without resources to resolve it. Jennie's dentally uninsurable for her specific issues. She's also attempting to find work, something made harder because her teeth are visibly broken as she goes for interviews. She went for one recently and had the tooth fall out during, and the interviewers literally told her to come back when she "got that issue taken care of."
As some of you know, Jennie was born with a cleft lip and palate, and has had more than 16 surgeries--some in foster care and some while on active duty in the Marines. She received military dental care, but the mouth bridge built for her years ago is now broken in several places, and moves and hurts when she chews. Her palate is sitting open (think of a newborn baby's skull and "soft spot", and then imagine that being the roof of your mouth). While the dental work she received in the past was sufficient for immediate needs, she has serious work that needs to be done. She's been waiting to hear back from the VA regarding dental assistance since Feb 2014, and they've recently told her to stop contacting them. She's been using Gorilla Glue to keep her tooth in while she volunteers with a veteran organization.
I know this is a lot to read, but I'm attaching an email she sent a few days ago. $28,000 is a crazy amount to ask, especially right after the holiday season. But any bit would help at this point. Prosthodontia is incredibly expensive, and she's exhausted the pro bono and charity foundation routes while trying to find some way of sourcing funds herself. The NY doctor she found is willing to do the work at cost, but it's still an exorbitant amount Jennie faces.
We don't want her to face it alone. I'm asking you to consider helping. Please read what she wrote me and consider what you're willing to contribute for this selfless friend who's faced daunting odds in this amazing life:
I feel like a whiner writing this, and I know I have so much to be thankful for, but I GLUED my front tooth back together again today and I’m just discouraged. All I wanted for Christmas was new front teeth. Or at least word from the VA they’d finally worked out my paperwork so I could have dental work done at the VA or by the VA.
Nope. No word beyond, “Please limit your status inquiries to once every 6 months so we’re not distracted from our work by having to answer your questions.”
Almost three years ago when a doctor in NYC suggested I petition to have my VA status changed to include dental, I was conflicted. I’d shied away from using VA benefits at all for a long time, convinced so many people deserved them more than I did. I was shocked she thought the VA might be the answer to resolving ongoing dental issues. Shocked and excited.
She’s the head of prosthodontics at a teaching facility in the city and also works one day a week at the VA. She said if they upgraded my eligibility to include dental she’d be able to see me as a VA patient. After listening and looking in my mouth, she didn’t know why dental wasn’t already part of my VA treatment plan. Heh.
I started the paperwork, hopeful. I sent away for records, submitted statements, shared photos.
She made an emergency repair to the broken porcelain and, after a long conversation I agreed to sit for a comprehensive examination so she could assess all that was wrong and send me an itemized invoice for out of pocket repairs just in case the VA didn’t come through.
I was hopeful, still. She cataloged several things awry with my cleft palate and the bridge--I love me some Navy dental but, 12 years after a soft tissue closure my palate is still open and between a few falls in Afghanistan and a Christmas 2013 skull smash session, my Navy issued bridge is broken in several places. Like it’s broken in half and moves. Not just cracked porcelain. The metal is broken. I don’t bite into things because it hurts and I’m terrified it will break more.
I was so excited she patched the tooth that day; there’s something completely demoralizing about having a broken smile. Nothing transports me back to being a 9-year-old foster kid avoiding eye contact with the kids at school like having a broken smile again. Literally.
I was anxious to get that letter… and then I read it. $28,000 for the bridgework and that’s without being charged for her time. I cried. I mean, it’s a super generous offer, the donated time, but who has $28k sitting around for dental work? I let her know I’d keep the letter and continue along the path she set me on with the reevaluation process for the VA.
That was February 2014.
When I moved down to NC the first thing I did was go to the local universities to see what type of outreach their prosthodontics departments do. One school said I could put my name on a waitlist to be added to a lottery and, in six months I might be chosen to be added to another list to be evaluated by the department… I’m still waiting for a call 14 months later.
I had another emergency porcelain repair at the VA in November right before heading out to clean up flooded homes in North Carolina with Team Rubicon and, luck would have it, the repair held for a full day. I was faced with 2 choices. Turn around and go home or head to the relief operation and try really hard not to smile or talk so no one would notice the broken tooth.
In a stroke of genius (desperation?) I stopped at Home Depot and bought Gorilla glue. And yes. I glued my tooth back together in the Home Depot bathroom. When I walked in to meet the rest of the volunteers I was able to smile. It only held for about a day so I kept the glue in my hygiene kit, reglued it each morning. If it broke while we were in the field working it was no big deal, since we were wearing face masks because of the mold. A friend caught me in the bathroom mirror with a tube of glue in my face and I confessed what I was doing.
Which brings me back to this morning and gluing my tooth together, again. I’m frustrated and my mouth hurts. I can’t bite into anything on the right side, I have nightmares about swallowing my teeth in my sleep and I’m scared to go on job interviews because a fractured smile impacts my self-esteem, despite my best efforts.
And I can’t reach out to the VA for another status update for six more months.
No insurance plan I’ve had since I’ve been off active duty has covered comprehensive prosthodontics. The open palate is a preexisting condition. My face/mouth, it seems, is a preexisting condition. Oh the irony.
Hindsight I guess I shoulda told the Santa at the mall I wanted new teeth for Christmas instead of hoping, after almost three years, the VA was coming through.
Additional details re: Dental Work and Funds:
They'll need to cut the broken bridge into pieces to remove it, determine a need for any localized bone grafting, and then over the course of multiple lengthy appointments, they'll take impressions of the upper mandible, build a new bridge (porcelain over metal), and cement it into place. During the process, Dr. Z will assess the need for soft tissue debridement of the skin graft and palate and possibly engage an oral surgeon to close the fistula. The quoted fees are pro bono and cover lab time, materials, and technicians' work only.
Jennie will be the only beneficiary listed on this funds account, so any funds raised will go directly to her, and not to the Quinn family (again, GoFundMe directs I inform you of this).
TL;DR Thank you for your support.
Struggling with the enormity of emotions as I sit and try and figure out how to write an update.
When Meg started this, after some teeth gnashing from me [kind of punny, right?] I was embarrassed.
I hated to feel like I was begging, and still didn't feel 100% like I "rated" to ask for help.
Meg insisted though, and so we did.
Sitting here now, more than a year later, three days post op from a surgery to remove a skin-graft-gone-wrong the Navy did in 2004 after opening my palate to try and address a sinusitis issue-- I'm beyond grateful for the help. I've traveled to and paid to see a variety of specialists in the last year, each time with the hope of them being "the one" to have a care plan.
I've met with a non profit and a member of congress. The former had no requirement to help me--and still opened their doors and their networks and wrote letters on my behalf and I'm grateful for their interest. Then there was a TV producer, who backed off when he realized it wasn't a "one episode feel good 'cause we helped a veteran" kind of case.
"Oh so it's more than veneers, then?"
The congressman, admittedly not mine, agreed to see me as a favor and, ostensibly lobby the VA on my behalf.
After 30 minutes at the Rayburn Building last Spring I'd heard his testimony, listened to him tell me how his cleft made him stronger and more resilient and how I should use mine to help others, like he did.
I quipped something borderline insubordinate about my willingness to go on fundraising trips for non profits and tell my story as long as they sold super glue where I was going because my teeth were still glued together.
He said if I'd write the letter, he'd send it to the VA on my behalf and asked if I knew any higher ups he should address it to. I pointed out if I had friends who were "higher ups " [I swear I thought only lance corporals used that expression] I'd be in THEIR office not HIS. I reached out to shake his hand as I left and he pulled me in, put his hand on the top of my head and prayed over me. Regardless of your religious background, it felt icky for an elected official to choose praying for me as a course of action in lieu of actual action.
I labored over the letter he asked me to write [thanks Aunt Annemarie], submitted it and followed up. Again. And again. One of his staffers finally told me they'd read a blog I wrote on immigration in 2016 and that the Congressman was going to "reserve his support for a veteran who was more aligned with the administration."
And so there went that "petitioning the VA on my behalf."
More specialists. I've resubmitted a claim to the VA to have my mouth added to my service connection and it was returned unsubstantiated for "dental." It's not "just" dental, though, it's otolaryngology, dental, prosthodontics... it's all the things inside my mouth and I have a bunch of documentation in my medical record to show what the Navy did while I was on active duty.
I need to have work done now, but I want access to care when I'm 63 if I need it, without fighting this hard again.
Veterans Benefits Administration [VBA] still won't acknowledge it, but by a fluke a great doctor at Veterans Health Administration [the VA most of us know is the actual hospital; VHA] said "that should be fixed and I think it's beyond my scope." I was referred to her by speech pathology. I was seen by speech pathology after falling down the stairs and concussing myself in January.
[different story--old back injury, sciatic issues, neuropathy, balance--I fall sometimes.] NBD. Cool thing? I was grabbed up by a caseworker with the PolyTrauma clinic. During initial intake there, I was referred to speech pathology for aphasia [thanks TBI] and I joked with her about not fixing my lisp because of the mess inside my mouth. She looked in my mouth and called ENT but ENT requires a referral from primary care. Once I had a primary care doctor [took several months because the Women's clinic is understaffed and I finally just asked for ANY PCM] I secured a referral to ENT.
She referred me out of the VA system with a Veterans Choice referral "Choiced me out" and I had a series of appointments w/ an ENT and an oral surgeon.
The oral surgeon laid out his plan for restructuring, bone grafts, implants and eventually prosthodontics--all out of pocket because he doesn't accept insurance.
The ENT said "let's get that mess out of there [the 2004 skin graft never stopped growing] and close your palate.
An hour after his team called to schedule surgery they called back to say the authorization had been rescinded and asked if I wanted to continue with the scheduled date.
I asked if I could hold the date and call her back.
I hung up. And vomited. And cried. And probably sh!t tweeted my frustration. I know I alarmed people with my sh!t on top of sh!t on top of sh!t Facebook post.
People scream "the VA sucks" but the truth is, the doctors I've seen at the VA have been amazing--it's the BS and the flaming hoops and the red tape and the mountains of paperwork that Veterans BENEFITS Administration requires of us to actually receive the care we need, that sucks.
Getting knocked down again and again by a system that doesn't seem designed to HELP the very people it's supposed to serve, sucks.
I called the ENT's office back and said yes, lets go forward. I went to my pre-op with my debit card in hand, humbled by the support from Go Fund Me.
Tuesday was a long day and when I finally made it back home, I joked with my friend about not having a cleft palate anymore--since the doctor closed it.
[Can I still make cleft palate jokes, then, since a cleft is an opening in, and technically, it's closed?]
One enormous hurdle down, several to go.
Next step is getting another opinion about the oral surgery course of action and moving forward with some sinus reconstruction and teeth. But first, healing.
They sent me home with a "moist" meal plan. I'm gonna stay with soft foods though, because "moist" is just wrong as an adjective for most things, especially food.
Thanks for championing my cause, and the cause of so many other veterans fighting for access to care-- and thanks for leaning in regardless of your politics, your party, your branch of service, your hobbies and proclivities.
Thanks for your feedback and truly, TYFYS*.
Thank You For Your Support
I've seen three specialists since this was launched and they've all said the same thing: you need a lot of work done; the teeth should come last."
I enlisted with a cleft palate, yes, but it was functional and fine.
Exploratory surgery by the Navy at Balboa left the inside of my mouth a mess even before the prosthodontics started to fail.
Someone told me a few weeks ago that's likely the strategy. "Wear me out so I stop appealing."
Thanks for caring, and sharing.
I'm excited to see if it changes access to private care.
In the meantime, I'm over here crowd funding my mouth because the AMAZING doctors I've seen in the last 10 weeks both agree the level of care I need is gonna take an act of congress, or god, to cover the work I need done.
"She will require a team that understands completely how to treat double cleft deformities. Ultimately, she will require closure of her fistula palate, expansion of her maxilla, advancement of her maxilla, (possible reduction of her mandible), some work on her nose to improve breathing, and structural revision of her lip."
The doctor I saw two weeks ago knows SecVA personally, and asked for permission to talk to him about my care.
Yes, please, sir.
Yesterday I sent an eight page (throughly copyedited) documented explanation of my three year attempt to access the care I need to the Undersecretary of the VA.
(because he invited me to when I met him at an event 3 weeks ago)
I *want* to believe the VA will come through because the care I HAVE had at the VA has been outstanding... in the meantime I'll buy super glue in bulk and keep paying out of pocket for chiropractic care even though "fractured back" is the reason I left active duty. Hashtag confused but determined.
Thanks for your support and for sharing; it's a long road, either way.
Dude. I can't believe, in just over a month, we're more than halfway to the initial fundraising goal.
When Meg and I debated (I was hesitant to share so much, to ask for help) launching this campaign, $28,000 seemed like an unattainable goal.
So much has happened in that month, and I'll get to that, but first let me say thank you. Yeah, YOU. Thank YOU for donating and sharing and posting and tweeting and emailing... for giving my mouth a voice.
I still can't believe how many of my friends donated ... from $5-$1000... some amounts that carried an inside joke, some amounts (all, really) that exceeded my expectations. Donations made me laugh and cry based on the donor, the note, the amount.
That's friends, and it's overwhelming. The strangers, though? People whose names I've never heard before, people I'll likely never get to look in the eye and thank?
I can't even... don't even know where to start with thanking y'all.
I didn't expect it, feel like I don't deserve it and I'm insanely humbled by it. By all of it. By each and every one of you.
Two friends, let's call them Owl and Starfish, keep tweeting the link and Owl asked me to post an update and so here I am.
In the last month, besides raising money, the campaign has raised awareness. Y'all have shared it with dental colleges and non profits and friends and family. Hashtag amazing.
In mid January I met with a world renowned plastic surgeon whose life work is dedicated to cleft palate repair. We spent nearly two hours in his office discussing my cleft history (I felt like a total me monster) and he looked AT and IN my mouth and catalogued all the things he sees that are wrong.
I never had "excellent" cleft care; it just wasn't in the cards for a foster kid in SoCal. Listening to him matter of factly explain what was wrong or what could have been done better was unsettling and exciting. I kind of geek out about dental discussions. Didn't even care that he said he couldn't wait to see me when I was finally whole. I knew what he meant.
He sent an email to a friend in Congress in the hopes he'd be able to intervene with the VA on my behalf. The letter read, in part:
"A week ago, I retired from my private practice or I would be glad to try and take on her case. She requires someone who is well connected into a wide variety of specialists, who are excellent at what they do. She has the need for orthodontics, plastic surgery, maxillofacial surgery, and likely others. She will require a team that understands completely how to treat double cleft deformities. Ultimately, she will require closure of her fistula palate, expansion of her maxilla, advancement of her maxilla, (possible reduction of her mandible), some work on her nose to improve breathing, and structural revision of her lip."
In layman's terms, "there's a whole lot going on in your mouth, Haskamp. The teeth are literally the tip of the iceberg."
I met with the Congressman this week, he's going to send a letter to the VA but the reality, as any of us who knows the VA at all knows, is the VA doesn't just write a check for outside care. After three years of spinning my wheels trying to get a dental claim started or get my comp and cert reviewed, period, I'm near certain the VA isn't going to move any faster or quicker even with a letter on Congressional letterhead.
More to follow on this course of action.
I had a call from an associate producer from The Doctors asking if I'd consider coming on the show but, after a brief discussion and follow on emails detailing my medical history, they ghosted. It's probable the depth of work was more than they'd be able to support and convey on their TV show.
All good; was pretty cool they even called to begin with.
A small cleft palate non-profit reached out but, again, its more involved than just fixing a lip.
A dental school in NC expressed interest in seeing if my needs "aligned with their curriculum" and I'm going to engage, tentatively. Not sure if "teaching tool" is the route I need to go right now. Still excited they reached out, though.
A team of private doctors in Georgia are interested in seeing my records and, at this juncture, I'm willing to let ANYONE WHO ASKS see behind the curtain. What do I have to lose, right?
(Anyone with a medical degree and experience in this field, obviously. Not gonna use my latest xRays as my profile photo or anything gross like that!)
Lastly, someone from the Veterans Benefits Association reached out via GFM and hasn't gotten back to me but I'm hopeful there WILL be a discussion about: my claim, my needs, the ineptitude of the process so far (three years and I'm still at the start line) and how to make it better for all veterans, not just me.
And there you have it. An update. People are talking and brain storming and sharing and helping and and and and...
Thank you for being part of all of this.
Excited, hopeful, grateful and humbled,
Oh. I haven't thanked Meg in a couple of days, so thank you, Meg. You're awesome; I know it was a tedious process to set this up. And you were right.