Tobias - A Laughing, Dancing, and Affectionate Boy with a Personality That Lights Up Every Room! / Moebius Syndrome
January 28th is Moebius Syndrome Awareness Day and Fenrici would like to shine the spotlight on Tobias - a pediatric hero with Moebius Syndrome who is always laughing!
Moebius Syndrome affects 1 in 50,000 to 1 in 500,000 newborns. It results from the underdevelopment of the facial nerves that controls some of the eye movements and facial expressions.
“I was in shock. My sweet little boy was never going to smile.” (lovewhatmatters.com). In 2017, when Eliza, (Tobias’ mom) was 20 weeks pregnant with Tobias, the ultrasound revealed he had clubbed feet and a “...hand that looked a little unique” (lovewhatmatters.com). It was a high-risk pregnancy, but Eliza stayed resilient.
“As soon as he was born, the nurses realized he had a small and recessed jaw, so he struggled to eat” (Eliza Moody). Eliza says that, “After digesting this was just another fixable difference, I learned to stop worrying and just enjoy being his mom. He was in the NICU for 11 days”.
When Tobias came home, Eliza noticed he wasn’t smiling or blinking. She had a gut feeling and trusted it. Tobias went in for a check-up at 2 months and the doctor told Eliza he would never smile. It was eventually pieced together that Tobias had Moebius Syndrome. As hard as this was, Eliza showed her strength and resilience and became more accepting and positive about the situation. Tobias shows his happiness through laughing, dancing, and showing affection all of the time! “He truly is the funniest kid. His personality lights up every room he is in” (Eliza Moody).
There is so much strength and love that goes into having a child hero with a pediatric rare disease or disorder, and Eliza has embodied that. To be resilient and see the light even when there is some darkness is not always easy, but it helps and shows amazing bravery! There are so many rare diseases and disorders out there that many of us don’t know about. Thank you Eliza for allowing us to share your and Tobias’ special story!
Moebius Syndrome affects 1 in 50,000 to 1 in 500,000 newborns. It results from the underdevelopment of the facial nerves that controls some of the eye movements and facial expressions.
“I was in shock. My sweet little boy was never going to smile.” (lovewhatmatters.com). In 2017, when Eliza, (Tobias’ mom) was 20 weeks pregnant with Tobias, the ultrasound revealed he had clubbed feet and a “...hand that looked a little unique” (lovewhatmatters.com). It was a high-risk pregnancy, but Eliza stayed resilient.
“As soon as he was born, the nurses realized he had a small and recessed jaw, so he struggled to eat” (Eliza Moody). Eliza says that, “After digesting this was just another fixable difference, I learned to stop worrying and just enjoy being his mom. He was in the NICU for 11 days”.
When Tobias came home, Eliza noticed he wasn’t smiling or blinking. She had a gut feeling and trusted it. Tobias went in for a check-up at 2 months and the doctor told Eliza he would never smile. It was eventually pieced together that Tobias had Moebius Syndrome. As hard as this was, Eliza showed her strength and resilience and became more accepting and positive about the situation. Tobias shows his happiness through laughing, dancing, and showing affection all of the time! “He truly is the funniest kid. His personality lights up every room he is in” (Eliza Moody).
There is so much strength and love that goes into having a child hero with a pediatric rare disease or disorder, and Eliza has embodied that. To be resilient and see the light even when there is some darkness is not always easy, but it helps and shows amazing bravery! There are so many rare diseases and disorders out there that many of us don’t know about. Thank you Eliza for allowing us to share your and Tobias’ special story!