Genesis Pediatric Therapy Center Helps 11-year-old Cope with Disorder
Cesar Marceleno works with therapists to improve skills that have diminished because of his diagnosis
A family video captures a favorite memory of 11-year-old Cesar Marceleno. He’s playing in the ocean on a family vacation in California. He’s carefree in the surf, and his body moves against the waves without much thought or effort.
Three years later, life isn’t as carefree; Cesar’s body movements and speech are very much changed. Instead of the ocean, Cesar moves against the waves of the therapy pool at the Genesis Outpatient Pediatric Therapy Center. On this day, he plays a game of tug-of-war under water with physical therapy assistant Nancy Greenwood as his mother, father and 6-year-old brother, Fabian, support him from the sidelines.
“Reach! Reach! Reach! Great job!” cheers Greenwood, as Cesar pulls lengths of rope against the water’s resistance.
“I’m winning! I’m winning!” laughs Cesar as he moves his arms and legs with the support of the water.
“You ARE winning!” Greenwood says.
“Winning” describes Cesar’s ability to make small strides in the face of a genetic disorder that has changed life for him and his family.
Today, the boy who played in the ocean on family vacations in California occasionally uses a walker. Recently, a transport chair was delivered to his home to make it easier for his family to take him on outings. It has become harder for Cesar to form words and drink from a cup. His physical and verbal skills have continued to decline over the past two years.
A Genesis support system
None of these hardships appear to weigh him down as he undergoes speech, occupational and physical therapy at the Genesis Pediatric Therapy Center. For here, there are still victories. Several times a week, Cesar works to “win” and “reach” in his tug-of-war battle against a disease that threatens to take those skills away.
His therapists have become a support system for Cesar and his parents, Fabian Marceleno and Estela Torres of Davenport.
His mother says: “I know the therapies help him and make him more confident. If he didn’t have these therapies, I can’t imagine where we would be.”
Several years ago, Cesar’s parents began noticing their son’s delayed speech. Then more physical changes became apparent; he had problems going up and down stairs, riding his bike and keeping up with his friends.
Getting a diagnosis
The pediatric visits to University of Iowa began. At first, doctors linked his symptoms to his diagnosis of lead poisoning as a toddler. Progressive symptoms recently led to genetic testing at Gillette Children’s Hospital in Minnesota and a difficult diagnosis.
Cesar’s mother remembers the exact date in 2014 when Cesar first went to the Genesis Pediatric Therapy Center.
“I was very anxious for the therapy to begin. I’m so grateful for the help and support he has had from his therapists. I cry and pray a lot for my son, and thank God every day to have him in our lives.”
Among his symptoms, Cesar has severe ataxia--a lack of muscle control during voluntary movements, such as walking or picking up objects. A sign of an underlying condition, ataxia can affect movement, speech, eye movement and swallowing. It results from damage to the cerebellum—the part of the brain that controls muscle coordination.
Cesar’s progressive condition presents a somewhat different challenge for his devoted therapists.
“More often, we’re faced with a stable condition, where we work on function and build upon the patient’s progress,” says Kimberly Nielsen, Cesar’s primary physical therapist.
“Cesar’s therapy helps him to physically cope with the changes in his body. We’re working to maintain and improve his balance to help prevent falls… strengthening his core… improving coordination for hand-writing so he can function better at school…”
Ataxia also affects the body mechanics Cesar needs to speak and swallow.
“Making sounds can be difficult. Drinking from a cup is a challenge because it’s hard for him to close his lips,” says Marybeth Myers, Cesar’s primary speech therapist.
“Through therapy, he’s working to gain confidence and articulate while talking on the phone or making requests at school. We’re working on closing his lips on a cup and swallowing. Cesar has to work extra hard to be able to do all the things that everyone else takes for granted.”
Cesar’s brother, Fabian, is his biggest cheerleader and helper. Both brothers will be in the spotlight August 19 at “Home Run for Life,” a Genesis- sponsored honor at Modern Woodmen Park.
During a Quad City River Bandits game, Cesar will be celebrated for his strides in rehabilitation and round the bases with Fabian. Fabian will run; Cesar will walk with the assistance of his supportive therapists and family.
It will be a high point for a sixth-grade boy who smiles often, even though his body gives him little to celebrate. It’s a lesson for everyone he meets.
“Cesar works so hard. He sees his siblings run around and do things he can’t do,” his father says. “Sometimes, he forgets his condition and tries to run and jump, too.”
Always, the family videos he watches take him back to an easier time.
“Cesar watches the videos and says, ‘Mom, I want to go back to the ocean.’ The last time he saw the ocean, it was a very happy time for our family. Life changes when something like this happens. Cesar teaches us to be strong.”
--- By Linda Barlow, Genesis