|Nathan enjoys going to the beach, an activity that's been made easier by an all-terrain vehicle chair.|
When Nathan Jenkins of Greenville, S.C., was born in November 2003, he was “monstrously tall,” says his mother, Lisa. So, when he started walking at around a year, she and her computer tech husband, Blake, thought Nathan’s constant falls were growing pains.
“We just thought it was a balance issue,” she says. “I didn’t think too much about it.”
It wasn’t until Nathan was a toddler that she realized something was amiss. His two older siblings could easily sprint up the stairs of their three-level home. But 2-year-old Nathan just sat there as if the stairs were Mount Everest. He couldn’t lift his foot up on a small curb, and he needed help to step down.
Lisa, a former French teacher and master’s student at the University of South Carolina, knew something wasn't right, but at the time, she had no idea what that was until October 2006. That's when she took Nathan, then nearly 3, to an Atlanta neurologist, who recommended a muscle biopsy, and learned he had limb-girdle muscular dystrophy (LGMD).
'Nathan's muscular dystrophy'
The family has been told that Nathan's condition is most likely a recessively inherited form of the disease — meaning it requires two gene flaws, usually one inherited from each parent — but the precise type of LGMD has not been determined.
"They just said, 'Be prepared to treat this as his own personal muscular dystrophy,'" Lisa says. "We laughingly call it 'Nathan's muscular dystrophy.'"
So, the Jenkinses have dubbed the disease “Nathan’s muscular dystrophy.”
In the intervening years since his diagnosis, Nathan — now nearly 10 years old — has experienced progressive muscle weakness in his arms, shoulders, torso and legs.
He can't reach up high or bend over to pick up an item. He can’t bathe or brush his hair without assistance, and he’s not able to lift heavy objects. He’s unable to walk the family dog, Sylvie, a terrier mix integrated into the family two years before Nathan’s birth (although he can feed her treats from the cupboard).
This decline in muscle strength has altered the way Nathan moves. In his younger days, he was able get up from the floor by crawling to and climbing on the coffee table. But since late 2012, scaling the furniture for standing support no longer has been an option.
These days, even rising from the chair at his computer desk requires leaning on something for assistance, although Nathan is still ambulatory. While he’s not able to climb stairs or get into a car alone, he can walk “pretty safely” around the first floor of the Jenkinses’ three-story house, which is not equipped for wheelchair use, Lisa says.
Originally, Nathan’s bedroom was located on the second floor, but it was moved to the ground level because he would awake early and head downstairs — sometimes experiencing falls, one of which resulted in a trip to the emergency room because of a broken bone. While Lisa says she prefers to have Nathan's room on the same floor as hers, she keeps an eye on him through a monitor and intercom. Eventually, she says, she thinks she'll have to install a stair lift and possibly a hospital-style bed.
Nathan's heart and lungs also are being monitored by his physician, pediatric neurologist Addie Hunnicutt, co-director of the MDA Clinic at Greenville Hospital System University Medical Group in Greenville, S.C. — described by Lisa as "the best doctor you’d ever want. So far, no functional issues have occurred with these organs, to which Lisa says, "Praise the Lord."
Just part of the class
Nathan is able to fully immerse himself in his fourth-grade studies at Sara Collins Elementary School in Greenville, S.C., without having to worry about his physical limitations. Collins provides barrier-free education to students with orthopedic, visual and hearing disabilities, as well as to students who don't have special needs. The school provides structural and educational adaptations, specialized training, and on-site occupational and physical therapy, so all students are able to maneuver and learn with relative ease.
While in school, Nathan uses a power chair to navigate the campus. His LGMD prevents him from writing by hand, so he uses a wireless assistive typing device that connects to his teacher's computer. He also has an in-class writing assistant for extra help.
Academically, Nathan is thriving, his mother says. He wants to be an architect or detective, reads at a high school level and excels in math and auditory learning, receiving As on his report card. His only weakness is his spelling ability, Lisa says — something they're working to improve.
“I can’t say enough about this school," Lisa says. "It’s absolutely normal [at Sara Collins] to have assistive devices parked outside classrooms, and the kids who go there that aren’t in the orthopedic program just think it’s normal. He's not the handicapped kid in the classroom; he’s just part of the class.”
Water has been 'great equalizer'
For Lisa and Blake, keeping Nathan moving is a ceaseless juggling act. On one hand, in order to prevent his muscles from atrophying, Nathan must remain physically active. Yet, his LGMD limits his exercise options. Because the neuromuscular disease impedes muscles from healing, the Jenkinses must be watchful of the amount of stress Nathan puts on his body. Too much strain may worsen his muscle disease.
Because Nathan’s LGMD weakens his shoulder and upper arm muscles, he’s unable to bring his hands up to stop himself his falls. When he does fall, Nathan usually hits the ground face first, oftentimes hurting his face or mouth.
This looming possibility of physical injury, combined with LGMD’s inherent restrictions, turns exercising on land into an exacting battle. Physical activity out “in the open,” as Lisa puts it, is not a safe option.
In late 2011, feeling that Nathan was losing ground, Lisa suggested to neurologist Hunnicutt that they explore aquatic (water) therapy. She thought it would help, and the doctor agreed. Since then, Nathan has been in aquatic therapy offered by the Kidnetics program at the Center for Developmental Services, a developmental services agency in Greenville. Lisa calls the therapy an "amazing fix." (Aquatic therapy is often recommended for people with neuromuscular disorders. See What About Exercise with LGMD?)
For one hour a week, Nathan works with a physical therapist in a tailored, pool-based aquatic therapy class to maintain and increase full strength and lung capacity. Sometimes it’s turned into a game, Lisa says, which is particularly appealing to Nathan.
“The year previous [to aquatic therapy], we saw a lot of things fall off his ‘able to do’ list," Lisa says. But since starting water therapy, Nathan has "seemed to maintain so much better. He loves water because water is a great equalizer.”
Says Nathan of his water therapy, "I like it most of the time. I love the laps, and now I can ever dive under water. I can hold my breath a lot longer than I used to. I also like to jump in the water because I have never been able to jump when I'm not in the water."
Playing in the great outdoors
Still, the potential land-based risks don't stop Nathan from playing outdoors. In fact, says Lisa, he's a member of the Mauldin Miracle League, an all-volunteer organized youth baseball team for children with physical and developmental disabilities. (The local team, founded nine years ago by Mauldin’s current mayor Dennis Raines, is a branch of the national Miracle League).
It’s a league built on the principle that every child deserves a chance to participate in America’s favorite pastime, regardless of his or her ability level. According to Lisa, there are players on the team who use power chairs or ventilators but move around the rubberized baseball field freely.
"They don't have positions, really," Nathan explains. "Everyone gets a chance to hit the ball. I can hit the ball from the pitcher now. I then use the chair to get around the bases. In the outfield, we practice throwing the ball or just having fun talking with our buddy."
Nathan also attends an MDA summer camp program at the Pleasant Ridge Camp & Retreat Center in Marietta, S.C. As part of the weeklong stay, Nathan and other children with neuromuscular disorders participate in fishing, swimming, arts and crafts, nature studies, talent shows and cookouts. "It’s nothing short of “amazing,” says Lisa. “He just loves camp. It's the best week of the year.”
Every spring for the last several years, Lisa has taken Nathan and his siblings on vacation to Myrtle Beach, a four-hour drive from their home. The tourist city provides free accessibility options for people with disabilities, including beach wheelchairs that have balloon tires and safety belts. “It’s huge and silly-looking, but it’s a lot of fun to have that thing,” Lisa says. “I just pile everything on the back, and off we go.”
For Lisa, not knowing Nathan's LGMD subtype hasn't entirely been a drawback. “We would like to know [the exact diagnosis], but sometimes I think it’s a blessing not to know,” she says. (Neither she nor Blake’s has a family history of LGMD.) “We just take everything at face value. I'm glad there's not a timeline that I'm comparing him to. It's great to keep our focus on him and what he can do and not worry about timelines."
MDA Medical and Science Editor Margaret Wahl contributed additional reporting to this article.