“When you hit rock bottom…the only way to go is up.”

The Franciscan Hospital for Children Heartbreak Hill 5K on June 14, 2014, was a special day for Justin Ith. It was the first time the 16-year-old, who weighed a mere 70 pounds at the time, had been outside for months. As a nurse pushed the wheelchair-bound teen across the finish line, he turned to her and vowed, “Next year, I’m going to finish this race by myself.”

Justin at his first 5K in 2014 and his second in 2015 after nine months of rehabilitation
Justin at his first 5K in 2014 and his second in 2015 after nine months of rehabilitation

A few months earlier, Justin had been living the life of the average high school student. Skateboarder. Guitar player. Anime aficionado.

“I thought I was invincible. I thought nothing could ever happen to me.”

Justin’s road to rock bottom started in December 2013. His joints were swollen and sore, and it hurt to move. The activities he loved—skateboarding, playing the guitar—were out of the question.

His pediatrician referred him to Boston Children’s Hospital Rheumatology Program, where Drs. Pui Lee and Robert Fuhlbrigge diagnosed him with reactive arthritis, a condition typically related to infection, and prescribed prednisone to manage his joint pain and control his discomfort.

The medication seemed to help. But on Justin’s 16th birthday—March 7, 2014—everything changed.

“I thought I was invincible. I thought nothing could ever happen to me.”

“It was a normal day. I was hanging out with my friends, except I was exhausted. I went to bed early that night. I woke up the next day and was sure I had a stomach bug,” he recalls.

A few days later, the teen couldn’t get out of bed.

His father rushed him to Boston Children’s emergency room, and Justin was admitted to the hospital.

Justin’s mysterious and rare condition

“He started losing muscle function from his extremities inward,” recalls Lee. His care team, which included both neurologists and rheumatologists, struggled to figure out what was causing his worsening paralysis.

His lab results pointed to lupus, an autoimmune disease causing his body to attack itself, and AMAN Syndrome (Acute Motor Axonal Neuropathy), an extremely rare condition that causes paralysis and loss of reflexes. Doctors started immunosuppression therapy, but Justin continued to lose function and could no longer breathe on his own.

“His last words few words before we intubated him were ‘Doctor, help me, help me,’” says Lee.

“I thought I was going to die,” remembers Justin. “I thought I was going to disappear and be gone forever.”

Over the next few weeks, Justin’s condition stabilized and he was discharged to Franciscan Hospital for Children for rehabilitation.

“No one at Boston Children’s had seen a case like Justin’s. We had read about a handful of other patients like Justin with this very rare severe consequence of lupus. They had gradually improved. We stayed hopeful that Justin would recover, too, but we weren’t sure he would make it,” says Lee.

At Franciscan, Justin needed to re-learn how to move just about every part of his body. He couldn’t eat, talk or breathe on his own and could barely move his fingers, arms and legs.

His daily schedule included physical therapy and occupational therapy to help him learn to move again. A speech therapist worked with him to help him learn to eat and swallow.

Justin at the Franciscan Community Leadership Award & Dinner Gala, where he received the Profile in Children's Courage Award. "I hadn't felt dapper in a while," he quips.
Justin at the Franciscan Community Leadership Award & Dinner Gala, where he received the Profile in Children’s Courage Award. “I hadn’t felt dapper in a while,” he quips.

After about four months of rehabilitation, Justin started wiggling his fingers and toes and began making small sounds through his tracheostomy tube.

“Rehab was a long, long road,” says Justin. “It was a big day when they decannulated my tracheostomy—no more ventilator!”

“Every time Justin came to clinic, we would see more and more progress. Every gain was pure motivation on his part. When he was just starting to walk again, he told me he was going to run a race after he got out of Franciscan. I wasn’t sure about that goal,” says Lee.

But Justin was sure. He worked with his physical therapist to build endurance and achieve his goal of running in 2015.

In February 2015, Justin was discharged from Franciscan.

Pure motivation in action

Tito Ith (Justin's father), Dr. Mary Beth Son, Justin, Dr. Pui Lee. "It's great to be able to stand with my docs who stood by me when I couldn't."
Tito Ith (Justin’s father), Dr. Mary Beth Son, Justin, Dr. Pui Lee. “It’s great to be able to stand with my docs who stood by me when I couldn’t.”

A few months later, Lee received an email update from Dr. David Leslie at Franciscan. “A group of us is running the 5K with Justin.”

“We talked it over as a department and said, ‘If Justin is running, we don’t have an excuse not to,’” says Lee. Half of Boston Children’s Rheumatology Program showed up that day to run and cheer for Justin.

“He was so motivated. It got us excited,” says Lee.

Now that Justin has crossed one finish line, he’s looking ahead to the next one. He’s set some new goals. “I’m back at Revere High School. I’m looking forward to senior year and prom. After that, I’m hoping to go to nursing school.”

Watch Justin walk out of the hospital and hear more about his journey.