Molly Lacey desperately wanted to go home.
Born with a rare neuromuscular condition and recovering, in August 2023, from a serious illness that was nearly fatal, the 28-year-old was in the Stanford Long-Term ICU in Palo Alto, being kept alive by a breathing machine.
A ventilator attached to the tracheostomy tube surgically inserted in Lacey’s neck pumped oxygen into her chronically weak lungs, a result of a muscle condition that had remained undiagnosed until doctors categorized it a few years earlier as a form of muscular dystrophy.
The last time Lacey had been on a “trach tube” was when she was an infant. It was removed before she entered kindergarten. After that, she grew up requiring non-invasive breathing support via a mask while she slept, but otherwise lived a relatively active life on the Inyo County ranch her father, Mark, operates in the small community of Lone Pine, raising rabbits, hogs and other animals. Her mother, Brenda, is an agriculture teacher at Lone Pine High School, which Lacey attended.
Surgery at age 13 to correct scoliosis prevented Lacey from engaging in popular area sports such as skiing and snowboarding, but despite a bone graft and two rods in her back, she still was able to ride her beloved horses.
Now, clinicians wanted to send Lacey to a long-term care facility – the typical route for an adult in her fragile state of health. There, being weaned off a ventilator would be long, difficult and not guaranteed.
‘I don’t care what I have to do’
Determined to be cared for by her mother and friends at her home in Paso Robles, the wine county where her father also has ranch holdings, in the summer of 2023 Lacey contacted pulmonologist Ravi Aysola, MD, chief of sleep medicine in the UCLA Division of Pulmonary, Critical Care and Sleep Medicine and director of the UCLA Sleep Disorders Center.
Dr. Aysola had met Lacey in 2017, when a UCLA clinical team was participating in the Undiagnosed Diseases Network, a study funded by the National Institutes of Health designed to solve the most challenging medical mysteries. Dr. Aysola also helped care for Lacey in 2018 after she had been hospitalized with acute pneumonia following a trip to the mountains.
That day in August 2023, from her ICU bed, Lacey was adamant.
“I don’t care what I have to do,” she told Dr. Aysola. “I can recover at home.”
“OK,” Dr. Aysola told her. “But you’re going to have to follow the rules.”
Advocating for herself
During his two decades as a pulmonologist, a specialty with a paucity of practitioners, Dr. Aysola has treated scores of patients like Lacey with congenital dystrophies and other diagnoses that seriously compromise their breathing.
As medical technology and treatment protocols have improved over the years, more patients are living into adulthood.
And as invasive and non-invasive breathing devices have become increasingly sophisticated, with data stored in a cloud that can be accessed digitally, Dr. Aysola has been able to manage complex patients like Lacey remotely with just a few in-person visits – after the patients and their caregivers undergo rigorous training.
Following assurances from Dr. Aysola that he would take on Lacey, Stanford clinicians released her to his care.
“No other doctor would have done this for me,” Lacey recalls. “And we had to advocate for him really hard.”
In what is believed to be one of the first cases of its kind at UCLA Health, Dr. Aysola successfully weaned Lacey off the ventilator and trach tube mostly virtually as she recovered at home.
The meticulous process included setbacks, including one in September 2023 when she was staying off the ventilator too long. But, in April 2024, Lacey had her tracheostomy tube removed, and the hole in her neck was stitched up that June.
Dr. Aysola has submitted two papers for publication in research journals explaining the protocols Lacey and her care team followed to get her back on non-invasive ventilation: a mask she wears while sleeping, instead of a tube-filled hole in her windpipe.
Now, she’s out and about during the day without breathing assistance. At night when she tucks in, she relies on support from non-invasive ventilation in which a hose connected to a mask or nosepiece delivers constant and steady air pressure to help a person breathe while asleep. In some cases, oxygen is used as needed.
A rigorous protocol
In June 2023, a gallstone issue had sent Lacey to the Stanford ICU after she initially was treated at a hospital near her home. She soon developed problems with her liver, kidney and other organs that required her to be intubated, put on a ventilator and undergo dialysis.
When Lacey finally was able to go home on Aug. 7, 2023, after Dr. Aysola took her under his care, she was on a ventilator and trach tube 24/7.
She was sent home with a laundry list of specialized equipment and eventually, a careful weaning schedule to follow – three hours off the ventilator, three hours back on it. She suffered a setback in September 2023 after she spent more time off the ventilator than prescribed. She developed asthma and couldn’t eat or get out of bed and didn’t recover until that December.
Dr. Aysola got Lacey back on the strict treatment protocol he developed as she continued to receive speech, physical and occupational therapy.
“You have to treat it like you’re an endurance athlete – you slowly build up your training; you don’t want to exhaust yourself,” he explained. “You have to be very rigorous about the protocol.”
Finally, in April 2024, Lacey was off the ventilator and trach tube and was able to savor her first sip of water in nearly a year.
“It definitely was super emotional,” Lacey recalled. “I never appreciated drinking water so much.”
Praise from another patient
Eryn Brown, a Los Angeles talent agent, faced barriers in getting employment or even accessing industry events because of her disability.
A patient of Dr. Aysola since 2020, Brown has an unknown muscular disability. She founded the non-profit 1IN4 Coalition, which refers to the number of people in the U.S. with disabilities. Members of 1IN4 include disabled creatives working in Hollywood who are focused on long-term institutional shifts to increase employment and authentic representation of disabled people.
Brown says she switched to Dr. Aysola because of his pragmatic and compassionate approach to treating patients.
“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. People with disabilities lead enormously productive lives, and their perspectives drive innovation. Dr. Aysola's work is case in point."
The health journeys of Brown and Lacey remind Dr. Aysola of his son, Siddharth, who was born with a disability.
“Every morning we’d be in the kitchen, and he’d leave when the school bus came,” Dr. Aysola recalls. “I would then remind myself I’m sending my child off into the world and relying on others. Allowing your child to go out in the world like that was a daily act of profound faith.”
“Sidd” died Dec. 23, 2019, about one month short of his 10th birthday. He had a rare brain malformation called perisylvian polymicrogyria and developed infantile spasms and struggled with seizures his whole life. He died of an unknown respiratory virus.
‘One in a million’
Lacey currently works at the California Mid-State Fair in Paso Robles as a receptionist during the off-season. During the fair in July, she handled box office duties.
She enjoys photography and riding her horses.
In October, Lacey has a routine follow-up appointment with Dr. Aysola. She hasn’t seen him since 2024.
“I’ve met a lot of doctors, and he’s one in a million,” she says. “If we didn’t have him and his care and understanding and determination to get me through this, I don’t know what would have happened to me.
“UCLA is very lucky to have him as a doctor and a person, and I’m so grateful to him.”
