Yuma mother documents 4-year-old’s struggle with rare Moebius syndrome

by Adnan Alam
  • Slug: BC-CNS-Moebius Syndrome. 565 words. By Genesis Alvarado.
  • 19 photos below, video available.

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.

Tobias’ mother, Eliza Moody, shares her family’s experiences and thoughts related to Moebius syndrome in her blog Smile With the Heart and on her Instagram account.

“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.”

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Tobias Lugo, 4, searches for ladybugs in his family’s backyard garden in Yuma on April 3, 2022. (Photo by Genesis Alvarado/Cronkite News)
Zeke Lugo, left, his father, Adrian Lugo, brother Tobias Lugo and mom Eliza Moody, pose for a picture at their Yuma home on April 3, 2022. (Photo by Genesis Alvarado/Cronkite News)
Tobias Lugo wears his brace, which was fitted after his feet were placed in a series of casts, at his home in Yuma on April 3, 2022. The bracing phase lasts from two to five years. Corrections done at an earlier stage prove more beneficial for clubfoot. (Photo by Genesis Alvarado/Cronkite News)
Tobias Lugo kicks and wiggles as his parents attempt to put his brace on in Yuma on April 3, 2022. He has to wear it for 14 hours a day to prevent his feet from going back to their original twisted positions. (Photo by Genesis Alvarado/Cronkite News)
Tobias Lugo’s casts and brace show the progression of his clubfoot correction with the Ponseti method in Yuma on April 3, 2022. (Photo by Genesis Alvarado/Cronkite News)
Tobias Lugo looks at his pet gecko inside its enclosure in Yuma on April 3, 2022. (Photo by Genesis Alvarado/Cronkite News)
Tobias Lugo, left, and Zeke Lugo are curious about their pet gecko, which their father carries to prevent the boys from squeezing it in Yuma on April 3, 2022. (Photo by Genesis Alvarado/Cronkite News)
A growth-chart ruler on a bedroom wall records how tall Tobias Lugo and his younger brother Zeke are. This photo was taken in Yuma on April 3, 2022. (Photo by Genesis Alvarado/Cronkite News)
Tobias Lugo tries to open the back door to his house after looking for ladybugs in the family’s garden in Yuma on April 3, 2022. (Photo by Genesis Alvarado/Cronkite News)
Tobias Lugo, 4, takes turns jumping off a chair with his brother, Zeke, 2, in their living room in Yuma on April 3, 2022. (Photo by Genesis Alvarado/Cronkite News)
Tobias Lugo asks why someone is taking pictures of him while he watches “Peter Rabbit” in his living room in Yuma on April 3, 2022. (Photo by Genesis Alvarado/Cronkite News)
Tobias Lugo was born with symbrachydactyly, a condition where fingers may be short or webbed. (Photo courtesy of Eliza Moody)
From left, Adrian Lugo, Tobias Lugo, Zeke Lugo, and Eliza Moody celebrate Moebius Syndrome Day on Jan. 24, 2020, in their home in Yuma. (Photo courtesy of Eliza Moody)
At 18 months, Tobias Lugo had a second hand surgery, which separated his ring and pinky finger, at Banner-University Medical Center Phoenix. He had to wear a cast for this surgery because he was older. (Photo courtesy of Eliza Moody)
Tobias Lugo first had surgery on his webbed left hand at 11 months of age to separate his thumb and index finger. (Photo courtesy of Eliza Moody)
Eliza Moody watches her 8-month-old son, Tobias Lugo, get an EKG after meeting with the genetics department at Phoenix Children’s Hospital in November 2018. (Photo courtesy of Eliza Moody)
Tobias Lugo at 3 months old, after getting his first brace fitted. (Photo courtesy of Eliza Moody)
This image shows how severe Tobias Lugo’s clubfoot was one hour after his birth March 13, 2018, at the Yuma Regional Medical Center. (Photo courtesy of Eliza Moody)
Tobias Lugo was fitted for his first casts at just 2 days old, the initial process of the years-long Ponseti method, at Yuma Regional Medical Center in Yuma on March 15, 2018. (Photo courtesy of Eliza Moody)