Rare Disease Left Her Paralyzed, now she’s running the Boston Marathon

In 2020, Marion Jones was living in Boston working for a green energy company when she decided it was time to see a doctor. For about a year, she had been experiencing nagging health problems.

“For me, it started to show up as this burning sensation in various parts of my body. It would maybe last for 10 seconds, and then it would migrate to another part of my body,” she said.

When she began to have excruciating back pain, she made an appointment.

The first doctor she saw couldn’t explain the symptoms, but a second doctor suspected multiple sclerosis, or MS. An MRI quickly ruled MS out, and Jones returned to her normal life.

But after developing a headache that lasted for several months, a friend convinced her to visit the emergency room. A doctor prescribed a muscle relaxer and released her, but just 72-hours later, Jones found herself back in the hospital – this time with difficulty moving the right side of her body.

It was there at Beth Israel Lahey, that Jones received news that would change her life forever. She was diagnosed with Neuromyelitis Optica, or NMO — a rare, autoimmune disorder that primarily affects the optic nerves and the spinal cord.

Sometimes referred to as the “cousin of MS”, NMO typically causes severe, rapid, and destructive attacks on the optic nerves and spinal cord, and can lead to permanent vision loss or paralysis.

Things quickly spiraled for Jones. A flare up caused her to experience partial paralysis, and doctors admitted her to the intensive care unit of the hospital.

But Jones, who had a limited ability to walk and care for herself, needed more specialized care and was eventually admitted to the Encompass Rehabilitation Hospital of New England – a hospital that specializes in inpatient rehab.

For Jones, who was an avid runner prior to her diagnosis, it was a particularly devastating blow.

“In 2019, I had run 35 five Ks in 35 weeks…to not being able to walk or get myself to the bathroom. It was just something that I had never thought would happen to me,” Jones said.

Jones, who had no family in Boston, said the doctors and therapists at Encompass set her on a path towards recovery from day one.

“They really became family for me. In the absence of my family. They were so patient,” Jones said.

Dr. Daniel Lyons, the medical director of Encompass Rehabilitation Hospital of New England, was a member of that team.

“Marion had was a situation where her auto immune illness that affected the cervical spinal cord injury. So essentially … she had a spinal cord injury. She had lost her strength in her arms, her legs. There was sensory loss. She also had a lot of pain and muscle tightness from the from the spinal injury,” Lyons said.

Jones’ rehab schedule was grueling – three hours of intense therapy every day. But Lyons said the work paid off. “She made incredible amount of progress from the time she came into the rehab hospital, she was using a wheelchair, non ambulatory. [In] a relatively short time, she had progressed through walking in parallel bars to a walker, and she was able to walk short distances with a walker when she left inpatient rehab hospital.”

Outpatient therapy continued for Jones, and it was during one of those sessions that her therapist challenged her to run on a treadmill. It was difficult for Jones, and she says she could only run for about 30 seconds, but it reawakened her desire to run again.

“After that session, I got home and I got on the bike path and I said, ‘I’m going to see if I can run for a minute,'” Jones said. “As the weeks progressed, the minute became a half a mile, and that half a mile became a mile. And so that that’s where I started, really just getting in the mindset of running again.”

Eventually, she regained her form. Jones says she never setout to run a marathon, but that’s where her path led her. Since her diagnosis, Jones has run in six marathons.

On Monday, she’s taking on the Boston Marathon. When she crosses the finish line, she’ll receive the Abbott World Marathon Majors Six Star Finisher Medal – which is only awarded to runners who have completed all six of the world’s most prestigious races.

In the lead up to the race, Jones has been raising money for Beth Israel Lahey, the hospital that diagnosed and treated her NMO. Jones calls coming back to Boston a “full-circle moment” for her.

“Doctors didn’t know if I would walk again,” she said. “To be able to run Boston, knowing what my body has endured and overcome, is going to be this is a victory lap…a celebratory victory lap. And I’m not just running for me. I’m running for the rare disease community.”

For more stories impacting the rare disease community like this, sign up for the CNBC Cures newsletter by clicking here.