The mother of a little boy with a rare disorder that renders him unable to smile wants the world to see his inner spark. Her son, she says, is happy, energetic, and the funniest kid she’s ever met.
Today, Tobias Lugo is 3 years old, and mom Eliza Moody of Yuma, Arizona, is an awareness champion for both her son and his community. Tobias was born with Moebius syndrome, a rare neurological disorder that affects cranial facial nerves.
“Specifically the sixth and seventh,” Eliza told The Epoch Times. “It is characterized by little or no facial expression, so they cannot smile, frown, or move their face.
“They also have no lateral eye movement and can’t blink. There is no cure.”
Fourth grade teacher Eliza, who has two sons—Tobias, and toddler Zeke—with her fiancé, bartender Adrian Lugo, experienced a high-risk first pregnancy. An ultrasound alerted the couple to their baby’s limb abnormalities, but they never knew Moebius syndrome was the cause.
“All of our genetic testing came back normal, so we were really surprised to find he had an underlying syndrome,” she said. “We were shocked to learn about Tobias’s diagnoses.”
Tobias was born with a small recessed jaw, clubbed feet, and a small webbed hand. He needed weekly casts to slowly turn his feet out for the first three months of his life, and two hand surgeries to separate his fingers.
At 2 months, Tobias’s plastic surgeon first speculated that he may have Moebius syndrome. Eliza was devastated, mourning the smile she would never see on her first born’s face.
“Adrian accepted the diagnosis right away. He is great with handling his emotion,” Eliza said. “I, on the other hand, did not. I cried for about a week. I was just so scared for his future and what this meant for him.”
Yet quickly, something clicked for Eliza. “Tobias was so happy and sweet,” she said. “I realized his syndrome wasn’t affecting him one bit. It helped me see that he was going to be just fine, and I just needed to be there for him as his loving mom.”
Tobias has had speech and feeding therapy, occupational therapy, and physical therapy for three years and counting. Eliza said he loves hugs and says “Hi” to every person he meets, he loves the outdoors, the water, sea life and dinosaurs, and “moves to the beat of his own drum.”
Eliza conceded that getting Tobias out of his diaper stage is proving difficult.
“He just isn’t ready for it. He doesn’t understand when I put him on the toilet,” she said. “It seems as though he might be a little cognitively delayed. He also doesn’t understand when I have some conversations with him, but his comprehension is getting better.”
Tobias also struggles to keep his medical shoes on for the recommended 14 hours a day, which makes it hard getting him into shopping carts and taking him along on errands in those shoes. However, Eliza said that she knows that “these challenges are just a part of who he is.”
“I stay patient. All of these struggles are temporary,” she added.
But, while behind on his milestones, Tobias is constantly striving to reach new goals. He speaks more and more, delights his mom by singing to himself, and has been walking since the age of 20 months.
Recounting the best moments of being his mom, Eliza said it is when she sees him “thriving while just being himself.” She recalled the first time Tobias used his left hand to try to hold a ball.
“He tried and tried for a couple minutes and couldn’t grip it. It made me so sad,” she said. “Then he got it, he gripped the ball! His actions always remind me not to doubt his abilities.
“I see him improving daily.”
Eliza believes God gave her Tobias for a reason. She feels blessed to have the ongoing love and support of family and community, and hopes to raise her son in an “open household,” knowing he was born different so that he can advocate for himself in the future.
“He makes me so proud. I hope that I can raise him with enough confidence and kindness that he knows how to handle any situation that might come his way,” she said.
“I feel like if we shield him from reality, that’s what will really bring on those shocking moments. I do not want a classmate to point out that he can’t smile. I want him to know that he is special, and unique, but just as important as any other person in today’s society.
“I am very hopeful for his future. No matter what obstacles he faces, he always conquers them in his own way.”
