Entering the 2012 season, excitement is at an all-time high around the Arkansas State football program. Arkansas native Gus Malzahn has taken over as head coach. The team returns 12 starters off a team that won 10 games and a Sun Belt title last year. And most importantly, three-year starter Ryan Aplin returns at quarterback, where the reigning conference Player of the Year already owns 16 school records, and is projected by some as a late round pick in the 2013 NFL Draft.
Yet despite the numbers that Ryan has put up on the field, it’s actually another Aplin- Ryan’s sister Carlye- who might be more popular on the Arkansas State campus. The15-year-old, who suffers from a rare disorder known as Smith Magenis Syndrome, is at most home games and has become the unofficial “Team Sister” of many Red Wolves players.
What is Smith Magenis? It’s a rare disease that occurs from a deletion (or missing piece) in the arm chromosome 17. The size of the missing piece affects the severity of the disease, with most children showing “mild dysmorphic features” (such as, hypoplastic middle part of the face, everted 'tented' upper lip, close spaced eyes) at birth, according to Dr. Iosif Lurie a geneticist/consultant at the Chromosome Disorder Outreach, a non-profit organization in Boca Raton, FL.
Carlye was no exception. According to Ryan, his mother knew something was wrong right away, with both parents spending long hours at the hospital immediately after her birth.
“Being a little kid, you just remember mom picking you up from school, dad picking you up, sometimes your grandparents,” Aplin said. “And you’d always go straight to the hospital.”
Carlye was later diagnosed with Smith Magenis, but thankfully was able to return home from the hospital for good a few weeks after her birth.
Only then though did the true challenges begin. With their parents trying to balance work with a growing family and Caryle’s special needs, Ryan and his younger brother Rhett were tasked with significantly more responsibility than most kids are at their ages. Many days included picking up Carlye at the bus stop and taking care of her, helping to pass the hour or two between when school ended and when their parents returned home from work.
It wasn’t always easy, especially since Smith Magenis patients suffer from any number of irregular behavioral patterns. According to Lurie, many have strange sleep patterns (Carlye usually goes to bed around 7 p.m. and awakes around 4 a.m.), some have self-injurious behavior, and others have random and unprovoked mood swings. The last symptom is something Ryan knows quite well, after an especially painful incident when he was 16-years-old.
“I have a memory of when I took my brother and sister to the mall,” Aplin began the story by saying. “She loved going on the playground and just getting out of the house.”
Unfortunately when it was time to leave, Carlye was none too happy. Apparently, neither was a bystander who witnessed what happened next.
“I just remember her having a good time, but when it was time to go home she just threw herself down in the middle of the mall and threw a temper tantrum,” he said. “I had a lady walk by and look at me funny and tell us, ‘You need to get her under control.’ Finally I looked at her and said, ‘You have no idea what’s going on. You have no right to make a judgment like that.’”
Thankfully as the years have gone on and as medication and understanding of the disease have improved, Caryle has grown to live a mostly normal life. While she’ll never be able to live on her own or drive, she does go to a normal high school with a strong special needs program, and just finished up middle school this spring. She communicates mostly through sign language, but according to her proud older brother is sharp with technology (“She works an iPhone better than I do,” he said) and like many children her age, loves Nickelodeon.
As a matter of fact, with Ryan now 12 hours away from home at Arkansas State, it’s actually Nickelodeon which can occasionally get in the way of some quality brother-sister time over the phone.
“She’s a little wild thing,” Aplin said with a laugh. “Sometimes she’ll want to talk to me, and sometimes my mom will hand her the phone but she’ll stay with Hannah Montana, or whatever she’s watching.”
Still, even Hannah Montana can’t take away from Caryle’s trips to Jonesboro to watch her brother and his teammates play. Several Arkansas State players have spent one-on-one time with Carlye on trips to Ryan’s house over spring break, and others have gotten to know her through visits to the school for games and practices. Carlyle has taken an especially strong liking to senior defensive end Tim Starson, whom she met when he visited the Aplin’s house during spring break of the players’ freshman year.
“We definitely built a relationship when I was down there,” Starson said. “We played and swam in the pool, but she’ll also get right into it with you. She’ll yell, jump on me, whatever.”
Aplin took it one step further. “She has a crush on Tim,” he said.
As Aplin gets ready for his senior year, it’s hard not to see how the maturity he gleaned from watching Carlye all those years has helped him develop into the leader of the Red Wolves. He’s on campus this summer leading voluntary workouts multiple times a week, as the Red Wolves get ready to try and defend their Sun Belt title. Starson calls his teammate “the ultimate leader,” and it’s easy to attribute Aplin’s leadership capabilities to things he picked up along the way from his family. For starters, he’s quick to credit his tireless work ethic to the parents who raised him.
“Parents of special needs kids don’t get the credit they deserve,” Aplin said repeatedly during a phone interview, praising them for balancing work, family life and Carlye’s special needs.
As for Carlye herself, well, Aplin has learned from her not to take any day single day for granted. His little sister has quietly become one of his biggest inspirations.
“It hasn’t always been easy,” Aplin said. “But I wouldn’t change anything about her. I love her just the way she is.”
For more information on Smith Macgenis Syndrome, visit the Chromosome Disorder Outreach Inc.’s website at www.chromodisorder.org.
Follow Aaron on Twitter @Aaron_Torres.