Story & Photo by Lisa Anderson
Cyle Sarko was born with Prader-Willi Syndrome (PWS). According to the Prader-Willi Syndrome Association, “The common characteristics defined in the initial report, included small hands and feet, abnormal growth and body composition (small stature, very low, lean body mass, and early-onset childhood obesity), hypotonia (weak muscles) at birth, insatiable hunger, extreme obesity, and intellectual disability. PWS results from an abnormality of chromosome 15, and definitive diagnosis is based on genetic testing.”
The article goes on to discuss the cause for the symptoms, which are likely due to a dysfunction of the hypothalamus—a small endocrine organ at the base of brain that plays a crucial role in many functions of the body. While this explains the syndrome, it certainly doesn’t describe Cyle and the personality those who know him love and respect.
It’s All about the Attitude
“It’s a one in over 20,000 chance that you would ever get it, and [Cyle] has a rarer form of [it],” explains his mom, Denise Sarko. “When he was born, we weren’t sure why he was so quiet, and he was very floppy.”
Cyle was not diagnosed with PWS until he was three or four months old. He spent his first 30 days in the NICU. “The interesting thing [with] him as a newborn, even though he was floppy like a rag doll, and he didn’t have too much expression, he just had this drive in him—like a no-fail attitude—from the very start. I always called it, ‘can do spirit.’”
PWS causes developmental delay, but the boy who didn’t sit up until he was one years old and walk until he was two, now spends his days working out at the gym, playing basketball, fishing, learning to refinish furniture, pulling weeds, learning guitar, and many other things that were once thought to be out of his reach. In fact, one doctor didn’t think Cyle would ever walk.
The therapies and environment set in place by Denise played a big part in his success, but there’s no denying his ‘can do spirit’ has played a large role.
Setting Up for Success
“We had to start out when he was young with an environmentally controlled diet, kitchen, home-life,” states Denise in reference to helping Cyle maintain healthy eating habits and weight management.
Obesity is a common problem with PWS. In fact, most people Cyle’s age (22) with PWS do not have muscle mass like he does. “A lot of families lock the fridge and lock the cabinets,” Denise explains. “We have always locked the cabinets, but there was only a small period of time that I locked the fridge because I conditioned him from the start [to] eat appropriately.”
Cyle and Denise have several small meals throughout the day. Part of the reason is to help Cyle regulate his sugar, but it helps with reducing the habit of overeating at mealtimes. There are several medical conditions that come as a result of PWS. For Cyle, it has come with hypoglycemia, thyroid issues, and narcolepsy. “One of the life-threatening disorders he has is called Central Adrenal Insufficiency, and that requires an emergency kit similar to an EpiPen, but it’s not Epinephrine at all.”
For the Love of the Game
Cyle was able to be a part of the general classroom, when he was in elementary and middle school. Instead of needing to go to a separate class for his specialists and therapies, the teachers were able to come to him. “It was a tremendous experience, because that’s where the friendships he has today [were] formed. Being in that environment, he always aspired to do what [the other kids] wanted to do. So, early on I plugged him into music, art, and even archery in middle school. He was in the chorus, [too]. He really liked all those extra experiences,” Denise says as she looks over at Cyle and smiles.
Denise brought Cyle to the Frank DeLuca YMCA Family Center when he was around five years old. As soon as he was eligible, she put him into basketball, and it quickly became his favorite sport. “He was so, so, so captivated by that whole bouncing of the ball. The coaches that took him under their wing were tremendous. The advantage of going through the Y system is that all children get to play.”
When Cyle was in high school, he obtained an Agriculture Associate Certification and the Florida Nursery, Growers and Landscape (FNGL) certification in horticulture. He has been a part of Future Farmers of America (FFA), and he’s shown animals at the Livestock Pavilion. He rides horses, is the sole caretaker of his dog Batman, and hopes to attend a few college courses in this spring. But if you ask Cyle what his favorite activities are, he will tell you basketball and fishing.
Cyle will always require a caregiver by his side, but he will never let PWS slow his ambitions.