Lily Bix-Daw, 25, heads to Dallas this week for intricate surgery to address idiopathic condylar resorption, a degenerative and debilitating condition affecting the jaw and many adjacent body parts. ICR would test anyone’s endurance and sanity, yet despite steep challenges, the Easthampton resident is on schedule to receive her BA from the University of Massachusetts Amherst this spring, having pursued her degree while enduring staggering pain, disfigurement, and financial hardship.

For nearly a decade, Bix-Daw has navigated academic, medical, and economic difficulties compounded by mind-boggling health care system hurdles. Such multiple obstacles, however, do not even begin to sum up the totality of her experience. Over the past five years, she also contended with a parent’s terminal illness: her mother, Deirdre Daw – a widely admired, brilliant visual artist – was afflicted by a rare brain disease. Deirdre Daw died in late 2023, a few days after her daughter’s most recent major surgery.

Bix-Daw has spent the last few years living a nightmare, yet somehow moves forward with courage and grace. She’s deeply grateful to those who’ve contributed to the GoFundMe campaign launched by her father, Heath resident Mark Bix. The online site is a fascinating synopsis of Bix-Daw’s medical journey, presented in both English and Japanese – the latter for the convenience of loved ones in Mark Bix’s native Japan.

ICR is characterized by progressive condylar erosion; the condyles are parts of the temporomandibular joint that allow the jaw to open and close. The disease results in the mandible, or lower jawbone, gradually rotating downward and receding into the neck. In addition to the psychological toll resulting from changes to her appearance, Bix-Daw lost the ability to fully open her mouth, chew certain foods, or participate in lengthy conversations. She has suffered – and continues to suffer – chronic and intense jaw, neck, and shoulder pain, as well as unremitting migraines.

“I started noticing problems around puberty,” said Bix-Daw. “It began with popping and clicking sounds. Later, there was pain, but I kind of got used to it. When I was 17, I tried to figure out what was wrong, which led to MRIs, referrals, and medical debt.” Acquiring MassHealth wasn’t easy, but Bix-Daw finally succeeded. In November 2020, she met with a renowned oral and maxillofacial surgeon at Boston’s Mass General Hospital in the hopes of undergoing total jaw joint replacement surgery.

The process involved a lot of waiting. “It took a year for a custom joint to be made,” said Bix-Daw, “and a year to get established with the surgeon. I had exploratory surgery to clear out scar tissue.” After each procedure, she required time to heal. There was an additional year of orthodontic procedures to pre-position her teeth for revised facial geometry. Finally, in December 2023, Bix-Daw underwent eight hours of major surgery.

Although the surgery achieved some desired goals, the outcome did not meet Bix-Daw’s overall hopes. “It’s complicated,” she said. “On the one hand, the doctors arrested the disease process.” This included introducing bilateral jaw joint prostheses and repositioning her maxilla and mandible; she now has functional prosthetic jaw joints and a restored facial profile. Multiple downsides, however, include unrelenting widespread pain and chronic facial swelling on the left side. “For pain, there are symptomatic treatments like Botox injections, cranial nerve block injections, and anti-inflammatory meds,” she said. “They provide temporary relief, but are unsustainable. They’re hard on the liver and stomach lining, and I don’t want to be reliant on them for the long term.”

Grateful for the successes, Bix-Daw is also candid about the drawbacks: “The surgeon dismissed my concern about a post-surgery hematoma, a large, hard lump that developed on the left side of my face,” she said. “Also, he and the other surgeon were supposed to be in good communication with each other and with my orthodontist, but that was not the case, which led to other problems.”

Article continues after...

Yesterday's Most Read Articles

‘A catalyst to a vibrant downtown’: Ja’Duke opening Greenfield location next week

New Bernardston Fire Station is up and running

Greenfield Police Logs: Feb. 24 to March 2, 2025

Redistricting could result in 19 staff cuts, Greenfield superintendent says

My Turn: A duty to call out demeaning immigrants and the rule of law

McGovern calls on voters to resist federal cuts to food services

Your Daily Puzzles

Cross|Word

Flipart

Typeshift

SpellTower

Really Bad Chess

Bix-Daw was left with far more scar tissue and swelling than expected, “yet [the doctors] were utterly dismissive,” she said. Dismayed that her surgeons weren’t open to treating her further, Bix-Daw sought other options. After much research, she identified and consulted with a renowned oral and maxillofacial surgeon at Baylor Medical Center in Dallas. That doctor identified the probable source of her pain, a scenario that’s far too intricate to explain here in full. For those intrigued by medical processes, here’s the briefest of versions: there’s likely been a leftward shift of the mandible and maxilla, causing impingement of an atypically enlarged left coronoid process – a thin, triangular bony projection of the mandible that plays a vital role in chewing and stabilizing the jaw – against the left zygomatic arch (aka cheek bone).

The timing of Bix-Daw’s Feb. 11 surgery is crucial: although Mark Bix recently managed to enroll his daughter onto his insurance plan, the victory is short-lived. Bix-Daw will lose access to her father’s plan at the end of this month, when she turns 26. Even with her father’s insurance, the best-case scenario is that only about 10% of her surgical – and none of her orthodontic – costs will be covered.

Mark Bix will accompany his daughter to Dallas. The price tag for the surgery and three follow-up visits will be about $70,000; orthodontia will require another $9,000. Additional costs include airfare, lodging, and ground transportation. Bix-Daw welcomes any and all support in her quest to move forward. Putting the nightmarish pain of the last few years in her rearview mirror would allow her to focus on obtaining an MFA and establishing a career in fine arts.

Lily Bix-Daw has gained levels of hard-won wisdom rare for her chronological age. “Your body is really the only thing you have,” she said. “It’s important to advocate for yourself.” Supporters and well wishers may read more about her situation, and consider giving her a boost at: https://gofund.me/4fd5a61e.

Eveline MacDougall is the author of “Fiery Hope,” and an artist, musician and mom. To contact her: eveline@amandlachorus.org.