Smiling with the heart
Local mom seeks to educate community, erase stigma on disabilities
To those who know him best, there’s no question that twoyear-old Tobias Lugo smiles biggest with his heart. Lugo lives with Moebius Syndrome, a rare neurological disorder caused by the absence or underdevelopment of the sixth and seventh cranial nerves, which control eye movement and facial expression, according to the National Institutes of Health.
Present at birth, signs of Moebius Syndrome often include an inability to smile, dental abnormalities, bone abnormalities in the hands, feet and/or jaw, speech difficulties and a delay in motor skills. While the exact number of individuals who live with Moebius Syndrome is unclear, the condition is estimated to account for roughly two to 20 of every one million births, according to MoebiusSyndrome.org.
For Lugo, an anatomy scan during his mother’s pregnancy showed he would likely be born with clubbed feet and abnormalities in his left hand – the initial indicators that “something wasn’t quite right,” according to Lugo’s mother Eliza Moody.
At two months old, Lugo had a consultation for one of the two surgeries his hand required. Moody raised concerns to the surgeon that she hadn’t observed Lugo doing much blinking or smiling yet, to which the surgeon responded, “I think your son has a condition called Moebius Syndrome.”
“It was a shocking appointment, because I definitely didn’t go into it
expecting to talk about any of that,” Moody said. “Once I got my feet back on the ground, we started getting him into different cranial/facial appointments and realized he was going to need a lot of speech and feeding therapy, because some of his tongue has paralysis. It’s been an ongoing journey ever since then.”
Because of the rarity of the condition, Moody said she was largely on her own at the start of her journey as a first-time “Moebius mom.” To her knowledge, there’s only one other family in the Yuma region who has firsthand experience with Moebius Syndrome.
“Through most of it, I was on my own, which is why I was so dedicated to being very open about Tobias,” she said. “Feeling alone made me want to speak out more. Through that, I found a Facebook group called ‘Moebius Moms’ and found a now really close friend in Phoenix who has a four-year-old son (with Moebius Syndrome). Through that network, it’s been nice to connect with other parents whose kids have that condition.”
The diagnosis was a hard blow, Moody said, but she found the grace to accept things as they were and mustered the strength to carry on – and her motivation was Lugo.
“As a first-time mom, I was so hung up on the fact that my baby would never smile; that was really hard for me to get over,” she said. “In the beginning it was devastating; I would find myself crying at random parts of the day. But I had an epiphany moment after a week where I looked at him and I just realized, ‘I’m sitting here crying and worrying about him, but he doesn’t know any different. He’s a happy baby just living his life.’ I realized in that moment that I needed to snap out of it and be strong for him, because I was the one making the situation worse, not his diagnosis.”
From that moment onward, Moody has been vocal about Lugo’s journey, communicating every challenge and obstacle he – and the rest of the family, by default – has faced and overcome via social media and their own personal blog, http://smilewiththeheart.blogspot.com.
“I’m never embarrassed or hesitant to talk about him,” Moody said.
Next month, Lugo turns three. He’s overcome much in his short life, having undergone the two hand surgeries as well as several dental surgeries due to the small size of his mouth; currently he’s involved in physical, speech and occupational therapies. According to Moody, Lugo is eligible for what’s known in the Moebius community as a “smile surgery” – a facial reanimation surgery that would transplant a bone from his thigh to his cheek, enabling him to smile – which the family is considering.
“I always worry about the possibility of bullying and mean kids making fun of him because he looks different,” Moody said. “I worry about him not being able to do certain things because he has a small hand or because he can’t smile – but he always proves me wrong. I was worried about his speech because he still doesn’t talk very much, and just weeks ago he said three new words. It has its challenges for sure, having a child with special needs and thinking ahead to school – it’s hard because you want to make all the right decisions.”
Prior to the COVID-19 pandemic, Moody had plans to start a program that would bring individuals with and without disabilities together for activities and social interaction in the name of inclusion and better understanding. When it’s safe to do so, she hopes to host these events on a regular basis at one of the local parks.
“Having a child with a disability has opened my eyes to the fact that there really is a separate area that special needs people are pushed to and I think that’s why so many people with non-disabilities, when they see someone at the store who looks different, they stare or they’re quick to take a double look,” she said. “And it’s not their fault, they’re just not used to seeing someone with special needs in their everyday lives. Exposing people more (frequently) to one another would help with that acceptance.”
According to Moody, education is one of the greatest equalizers. Rather than staring at individuals who look different from themselves, she encourages people who don’t live with disabilities to approach those who do when they cross paths, ask questions and try to get to know their situation.
“So many times, people stare at us in a store and I just want them to ask me questions, because I’d love to help educate them,” Moody said. “If you’re going to take the time to stare, go ahead and take the time to ask questions and get to know the person more. Just listening to the reality of it is really helpful. Everyone has differences, whether they have a disability or not. When we put those differences out there more, it’s just less shocking. It shouldn’t even be a shock, because it’s someone’s everyday life.”
As the old adage cautions against judging a book by its cover, Moody suggests drawing conclusions about other people based on their character versus what they look like.
“Tobias can’t smile, he can’t make that warm greeting upon first meeting someone,” she said. “It’s interesting that this mask phenomenon is happening – everyone’s kind of living in his world now, because no one’s able to show their expression behind these masks. Everyone’s realizing ‘I have to use friendliness and kind words and gestures to make a warm impression’ versus a smile and that’s exactly how he’s going to have to live the rest of his life. I think it makes him more relatable now.”
And speaking of relatability, through sharing their own story, Moody said she hopes to also bring hope and encouragement to other families who’ve recently received a Moebius diagnosis.
“I know where they are; it can be so scary and carry so many unknowns and questions,” she said. “Whenever someone reaches out to me I always tell them, ‘Don’t hesitate to ask questions’ and I’ll answer anything that I can. This is a syndrome, and there is a spectrum; there are more severe cases and less severe cases. Tobias’ case is more of a mild one. I tell everyone who reaches out to me to take my story with a grain of salt; some kids require a feed tube and some don’t, and some kids take years to walk even though they eventually get there. I don’t want parents to fixate and compare their story with ours. I want to be seen as more of a guide through that journey they’re about to go on.”