Moebius syndrome is a congenital condition that prevents some or all facial and eye movement and comes with other health complications. One Yuma mother has documented the journey of her 4-year-old son’s struggle with the rare disorder. (Video by Genesis Alvarado/Cronkite News)
YUMA – Tobias Lugo is a 4-year-old preschooler who loves dinosaurs and watching TV.
He also has Moebius syndrome, a rare neurological disorder that prevents some people from smiling, frowning, raising their eyebrows or even blinking because of paralysis or limitations of cranial nerves. He also has endured multiple surgeries on his feet and left hand.
According to Johns Hopkins Medicine, Moebius syndrome is a “rare congenital (present at birth) condition that results from underdevelopment of the facial nerves that control some of the eye movements and facial expressions. The condition can also affect the nerves responsible for speech, chewing and swallowing.” Researchers estimate that the syndrome affects as few as 1 in 500,000 newborns, according to The National Library of Medicine.
“I wanted to just start spreading that awareness, and let everyone know that my son was born with this. There are so many incredible anomalies out there that kids can be born with,” Moody said.
Her blog post titles range from “Why I don’t want to hear ‘He will be fine’” to “Having a child with limb differences.”
In addition to being unable to blink or form facial expressions, Tobias was born with clubfeet and an underdeveloped left hand that’s webbed.
“So his feet were completely, like, turned in, and we noticed that on the 20-week scan when I was pregnant,” Moody recalled.
At 2 days old, Tobias started the Ponseti method, which is the main treatment for clubfoot, a condition in which one or both feet are twisted out of shape or position. A doctor first placed a cast on his feet to force them into a new position, a process that takes a few weeks or months. Tobias went through about a dozen casts of different sizes in three months, then was fitted for a brace to prevent his feet from twisting back to their original position.
Now, Tobias uses the brace for 14 hours a day. His parents try to have him wear it while he sleeps to prevent the discomfort he’d experience using it while awake.
They also help his comfort with eye drops. Tobias can’t blink, which causes his eyes to dry out. His parents also make sure he wears sunglasses outdoors because he can’t squint to protect his eyes.
“We put sunglasses on him when it’s bright out, but he doesn’t really like wearing them,” said Adrian Lugo, Tobias’ father. He can close his eyes to sleep, but it seems to be a struggle for him.”
Tobias had his first surgery on his webbed hand to separate his thumb and index finger, as well as his middle and ring finger, when he was 11 months old. His second and last hand surgery, to separate his ring and pinky fingers, was performed at 18 months.
Moody and Lugo are working toward starting a nonprofit they intend to call Park Pals in Yuma to allow children with and without disabilities to socialize with each other at a playground once a month.
“I feel like that would lessen bullying,” Moody said, “that would lessen making fun of others who are different, cause ‘Oh yeah, he has Moebius syndrome, he’s the kid that can’t smile.’ The more you talk about it, the more it becomes the new normal.”