Molly Lacey, a 28-year-old woman from Lone Pine, California, returned home after a prolonged stay in the Stanford Long-Term ICU where she was kept alive by a ventilator attached to a tracheostomy tube. Lacey suffers from a rare form of muscular dystrophy that compromises her breathing. After recovering from a nearly fatal illness in August 2023, doctors initially recommended that she move to a long-term care facility for weaning off the ventilator.
Instead, Lacey advocated for at-home care under the supervision of Dr. Alok Aysola, chief of sleep medicine and director of the UCLA Sleep Disorders Center. Dr. Aysola had previously treated Lacey as part of the Undiagnosed Diseases Network and during earlier hospitalizations.
“I don’t care what I have to do,” Lacey told Dr. Aysola from her ICU bed. “I can recover at home.”
“OK,” Dr. Aysola replied. “But you’re going to have to follow the rules.”
Dr. Aysola has extensive experience treating patients with complex neuromuscular conditions using both invasive and non-invasive ventilation technologies that allow for remote monitoring through cloud-based data systems and limited in-person visits.
After assurances from Dr. Aysola that he would take on her case, Stanford clinicians released Lacey into his care.
“No other doctor would have done this for me,” Lacey said. “And we had to advocate for him really hard.”
Lacey became one of the first adult patients at UCLA Health to be weaned off both a ventilator and tracheostomy tube primarily through virtual management at home under strict protocols set by Dr. Aysola. The process included setbacks—such as complications when she deviated from her prescribed schedule—but by April 2024, her tracheostomy tube was removed and her recovery continued with non-invasive nighttime ventilation only.
Dr. Aysola has submitted research papers detailing the protocol used for Lacey’s transition back to non-invasive support.
“You have to treat it like you’re an endurance athlete – you slowly build up your training; you don’t want to exhaust yourself,” Dr. Aysola explained about his approach.
Lacey described drinking water again after months without it as “super emotional.” She is now active during the day without breathing assistance and works as a receptionist at the California Mid-State Fair in Paso Robles during the off-season.
Another patient of Dr. Aysola’s, Eryn Brown—a Los Angeles talent agent living with an unknown muscular disability—praised his pragmatic approach: “Living with a disability is not sad, it’s just one of the millions of ways people exist in the world,” Brown said. “What is sad is how people are treated because they are disabled… Dr. Aysola’s work is case in point.”
Reflecting on his own experiences as a parent of a child with disabilities who died young due to health complications, Dr. Aysola noted how these journeys inform his perspective on patient care.
Lacey expressed gratitude toward her physician: “I’ve met a lot of doctors, and he’s one in a million… UCLA is very lucky to have him as a doctor and a person, and I’m so grateful to him.”
UCLA Health remains among national leaders in pulmonology according to annual US News & World Report rankings (https://health.usnews.com/best-hospitals/rankings/pulmonology-lung-surgery).
