Patient Stories: 
Rhana
Rhana

Some journeys are planned, some just happen. Rhana’s journey started unexpectedly on December 15, 2012. A champion gymnast at the age of 12, Rhana was running to warm up for gymnastics like she had done a hundred times before but, something was different this day. Her arms grew heavy and she had trouble breathing.

“We got a call from the gym that she was sick,” said Rhana’s father Robert Fleming. “We didn’t really know how sick. We didn’t really think it was catastrophic sick.” “I said ‘was there an accident?’ ‘Did she fall?’ and they said, ‘no, we were just doing warm-ups’,” her mother Cheryl Fleming added.

Roughly one hour later Rhana was at the Emergency Room at Hasbro Children’s Hospital in Providence, Rhode Island. She arrived by ambulance on a body board with neck support. After a long, painful 3-hour wait on a stretcher in the emergency room her body was becoming paralyzed (during which she lost her ability to speak, began losing movement in her legs and her breathing was deteriorating rapidly - all while in excruciating pain). She was finally taken to be examined in the Emergency Room. She stopped breathing less than two minutes after they took her for examination. At that point she was in critical condition. She was intubated, paralyzed from the neck down and unable to breathe and in extreme pain, but fully aware of the surroundings with her eyes open. They admitted her to the Pediatric Intensive Care Unit.

The doctors at Hasbro diagnosed her condition as Transverse Myelitis (TM). TM is an inflammation of the spinal cord which can affect everything from movement to swallowing to involuntary systems like breathing. Rhana had symptoms in all three areas. She was unable to move, needed a ventilator to breathe and was in constant pain.

Once at the hospital, she started to respond to treatments about ten days later when she moved her right foot for the first time. Over the next few weeks came many milestones, each reported by her parents on their website rhanasjourney.com.

Rhana

In January 2013, Hasbro doctors recommended the Flemings consider Hospital for Special Care for Rhana’s rehabilitation. They drove over and reported on their website that “With many pools, gyms, library and media rooms it’s a place built to promote healing. It’s open and airy and most of all it is QUIET.” What made an even bigger impression of her parents, though, were the people they met here - both staff and patients. They noted that here Rhana would meet and talk with people who actually know what it is like to face the challenges that lay before her.

So, on January 25, 2013 Rhana arrived at HSC. Within days, she invited another patient (also 12 years old and in the sixth grade) in her room to watch the movie “Annie” as they ate chocolate chip cookies. These girls became great friends and to this day keep in touch via email and text messages.

The next few months were filled with a lot of firsts, some setbacks and then some more progress. On February 4th, Rhana went off the vent for 45 minutes, the first time she had breathed on her own since this all started. That same week HSC got her an iPad and stylus so she could communicate and control her own choice of movies (“The Shining” was the first). A few days later she got her first electric wheelchair that she could control through a breathing tube.

Within a few weeks she was routinely off the vent for 12-16 hours a day and long dormant muscles were coming back. In the middle of her challenges, Rhana gave us all proof of what she is capable of. Here is the story in her parents’ words:

Today my daughter showed me what it means to be selfless. There is a new patient in rehab. She didn’t want to do her PT, to get up and walk a few steps. Her mother and therapist were trying to coax her and Rhana wheeled up to her and said “You can do this. I’ll walk with you, you got this. We’ll do it together.” The girl got up. She walked many feet with Rhana right by her side, coaching and cheering her every step. I was amazed and so proud of my strong, beautiful daughter.

We all are.

By early May, Rhana had been off the vent for as long as 30 hours, and on May 16th she was off the vent for good. By the end of June, Rhana returned home for the first time since December. She has returned to school three days a week while getting back involved with her friends at school and gymnastics.

Rhana’s challenges continue but she goes about life undaunted by them. Whether it is the school dance or having her girlfriends over for a sleepover, Rhana’s determination and pure sweetness shine through. With a little help, she already walks out to get the mail, paints beautifully with her right foot and seems to be unencumbered by worry regarding her challenges.

When Rhana and her parents agreed to come back to join us for the Annual Meeting, she had a long list of friends (both patients and staff), she wanted to see. And they all were just as excited to see her.

Sadly, Rhana passed away in August of 2016. Her friends at HSC will always remember her smiling face.