West Greene senior hopes to change hearts

February 22, 2014
West Greene High School senior Myranda “Jo” Kennedy prepares for her senior project on Friedreich’s Ataxia, a rare genetic disorder she was diagnosed with in the third grade. - Tara Kinsell/Observer-Reporter Order a Print

ROGERSVILLE – By most accounts, Myranda “Jo” Kennedy is a typical high school senior. She is looking forward to graduation. She’s explored higher education options, and is confident in her plan to become a veterinary technician. The best part of her day is saying “good morning” to her ever-evolving menagerie of pets.

There is just one thing that sets Jo apart from her counterparts: a rare progressive genetic condition known as Friedreich’s Ataxia or FA, named for the German doctor who first described the condition in the 1860s. FA attacks the nervous system, resulting in a wide range of symptoms, including muscle weakness, strokes, speech problems and heart disease.

Jo maneuvers the halls of West Greene High School in a motorized wheelchair. Simple tasks to others are extremely taxing on her.

“She puts more effort into just getting up and getting ready to go to school than most kids put into their whole day,” said Melody Kennedy, Jo’s mother. “It takes a lot longer for anyone with FA to recover. A simple ear infection can have her down for five days, and when she was first diagnosed in the third grade, she had an occupation therapist and a physical therapist.”

As it became clear Jo’s condition was progressive, these services stopped. Help for Jo in general is limited. She can receive funding for college, or receive the help to get a specially equipped vehicle, but not both. She will begin a self-paced online program through Fairmont State University after graduation. The driving will wait until her parents can afford to make it happen.

With just a few months left as a high school student, Jo saw an opportunity to become the teacher. When she presents her senior project, it will be on a subject with which she is very familiar: FA.

“I feel like since I have it, it’s something easier to do a project on,” she said with her quirky smile. But Jo confessed there is a much deeper reason behind her decision. Although her fellow students know Jo has a medical condition, she said some of them are too self-absorbed to really see what others are going through. That includes what Jo goes through every single day.

“I think I want them to know that everybody is going to need help sometime. There are all different kinds of people who need help,” Jo said. “I want them to see that they don’t need to be so selfish all the time. Everything isn’t always about them. If (after her presentation) one person is nice to somebody just because they are different, then it is worth it.”

Most students just “take her as she is and they don’t think about it. She’s been here with some of these kids for 13 years. To them she’s just Jo,” her mother said.

“When Jo started having symptoms, her pediatrician kept saying, ‘Oh, I don’t think it’s progressive,’” Melody said. “I pushed the issue. I said, ‘There is something just not right.’ Even her kindergarten teacher noticed.”

Jo had shakiness and would drop things like her lunch tray. They began taking her to the doctor in the fall of 2002. She wasn’t diagnosed until March of 2004.

It was Jo’s podiatrist who pointed the family in the right direction. He was treating Jo’s flat feet when her mother mentioned an incident at church when Jo fell.

“She fell over backwards. He said, ‘If she fell backwards, that’s neurological.’ At his urging, we started going to Children’s Hospital trying to figure everything out,” Melody said. Eventually the family learned that there are two doctors in the United States leading the research of FA. Dr. David Lynch, pediatric neurologist at the Children’s Hospital of Philadelphia, is one of the two.

Jo is among the more than 150 patients with FA from around the world who visit Lynch each year. FA affects only one in about 50,000 people. There is no cure. There are no methods to prevent it. There is only research in the hope of finding ways to slow its progression, control its symptoms and hopefully one day put a stop to it.

The one medication that seemed to renew Jo’s energy, the antioxidant Idebenone, is not available in the United States and is cost prohibitive at $9,000 for a month’s supply.

“She experiences fatigue at a cellular level. Her fatigue is like having mono all of the time,” Melody said.

As Jo’s condition has progressed, her speech and movement have slowed. It takes focused concentration on her part to do something as simple as lifting her leg, and that can zap her energy.

“I think it progresses slowly, but ever since I got my surgery (a spinal fusion), it has been going down a little further. I could walk a little bit after my surgery. Now, I can tell my legs to move, but they only move like an inch,” Jo said. “I really have to concentrate and put my whole mind into it or they don’t move at all.”

FA progresses at a different rate for everyone, and the symptoms vary from person to person, Melody said.

Another of Jo’s symptom is slowed speech. Like moving her legs, it takes time for her to vocalize her thoughts. One of her great frustrations is with those who finish her sentences rather than waiting for her to get her own words out. She is very bright and articulate. She just has difficulty “coordinating her body,” Melody said. “Her speech gets worse when she gets tired.”

Understanding what Jo faces on a daily basis is difficult for those without FA. There are few with the disease in this area. Most with FA connect through Facebook and online support groups. Once a year there is an opportunity for those with FA to gather at a ranch in Indiana for what is known as FA Woodstock. It was started by a family with two daughters to give them a chance to meet others like them.

“When she was 9, she told me once she didn’t want anybody to think she wasn’t trying or she was being lazy when she tried so hard to do everything she did,” Melody said.

A wisecracker, Jo tries to lighten the mood by telling stories about her father, Randall, 56, and her brother, Randy, 35, who lives with them. Another brother, Ben, 27, no longer lives at home. Randy developed spinal meningitis when he was 3 years old, and it left him with diminished short-term memory.

“We laugh a lot,” Melody said. “If we didn’t laugh a lot, we’d be sitting around bawling all of the time.”

Tara Kinsell started her career in journalism with the National Geographic Insider Magazine and the Gaithersburg Gazette Newspaper in Montgomery County, Md. Tara has written and photographed sports, features and news stories for the Herald Standard, Greene County Messenger and Albert Gallatin Weekly. She holds degrees in journalism and graphic design from Waynesburg College, now Waynesburg University, and the Art Institute of Pittsburgh, respectively.

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