Eliza Moody was 20 weeks pregnant and glowing. She and her fiance, Adrian were about to become parents and they were off to find out the gender. At their 20 week ultrasound, they discovered they were having a boy. However, they were also told that something wasn’t quite right.

Their baby had clubbed feet and a hand that looked a little unique. Nothing was certain yet but Eliza’s pregnancy turned into a high-risk one.

Their darling son, Tobias was born 14 March and was moved to the NICU due to a small and recessed jaw, which caused difficulties eating.

Tobias
Tobias was diagnosed with clubbed feet at birth. Source: Facebook

‘Everyone told me not to worry’

After 11 days in the NICU, Eliza took her son home. However, at 6 weeks old she noticed he wasn’t smiling yet.

Every day I made silly faces, weird sounds, and looked like a crazy mum, all in the hope he would smile. I also noticed he wasn’t blinking or moving his face. He would only close his eyes to sleep. Everyone told me not to worry, but my mom intuition was telling me something else. 

When Tobias was two months old, Eliza voiced her concerns to Tobias’s plastic surgeon (for his hand, which was webbed at birth).

Tobias' Journey
Eliza and Tobias. Source: Facebook

As the doctor listened to my concerns, she then expressed her thoughts on what was wrong with him. The only thing I remember her saying is he wasn’t going to smile. I asked her, ‘So he isn’t going to smile at all?’ and she said, ‘No. He seems like he will be unable to.’ 

Going into this appointment I was expecting to hear, ‘He will move his face after some physical therapy,’ or, ‘Give it a few months, because every child is different.’ I never thought we were going to get the news my sweet little boy was never going to smile.”

The doctor later confirmed this, explaining that Tobias had Moebius Syndrome.

Right away, [the doctor] told Adrian to tell me not to Google it, but how could I not?!

I went crazy searching every website that came up. As I read the many articles, everything just clicked. I thought, ‘This is it. This is exactly what he has.’ It all added up.”

Tobias was around two months old when he was diagnosed with Moebius Syndrome. Source: Facebook

What is Moebius Syndrome?

Through her Google searches, Eliza discovered that Moebius Syndrome is a rare neurological condition that primarily affects the muscles that control facial expression and eye movement. The signs and symptoms of this condition are present from birth. It happens at random. There is no cause or no cure.

Tobias with his dad. Source: Facebook

Weakness or paralysis of the facial muscles is one of the most common features of Moebius syndrome. Affected individuals cannot smile, frown, or raise their eyebrows.

The exact incidence of Moebius syndrome is unknown but researchers estimate that the condition affects 1 in 50,000 to 1 in 500,000 newborns

What this means for Tobias

Tobias is unable to move most of his face. He cannot move his eyebrows or make any facial expressions. When you look at him, he always has a serious look.

Moebius Syndrome
Source: Facebook

He can move his lower jaw and tongue, but can’t utilize the upper part of his mouth or lips. His mouth is smaller, so his teeth are very crowded. He also sees a speech therapist every week.

Because his eye movement is affected, Tobias cannot move his eyes from side to side. He can only move them up and down, so he has to turn his head if he wants to look at something laterally. Tobias is unable to blink, but he does close his eyes to sleep.

Another common symptom for kids with Moebius is upper body weakness.

Tobias has been seeing a physical therapist and occupational therapist since he was 3 months old. They worked with him to strengthen his core and help him sit up, crawl, walk, jump and go up and down steps. Tobias doesn’t meet physical milestones as quickly as other kids his age, but he always gets there eventually.”

‘Will my boy ever smile?’

Tobias is now three. He is a big brother and a sweet little boy who lights up the room. Eliza admits that it’s gotten easier over the years. She can now talk about it without tearing up and is embracing every amazing thing about Tobias.

Moebius Syndrome
Source: Facebook

As Eliza shares on Tobias’ Facebook page,

When I was pregnant with him, there were so many uncertainties about what lay ahead. What would he look like?
Will he be able to use his feet and hand?
Then those uncertainties doubled once he was diagnosed with Moebius Syndrome.
Will he be able to eat? 
Will he fit in?
Will my boy ever smile?
But the one question I’ve never had to wait to find the answer for is, “IS HE HAPPY?”. He can’t smile, but he sure does know how to show it in other ways. He giggles uncontrollably, he dances to any song played, he greets family, friends and strangers with a big hug.
Yes, I know my T is happy.”
Moebius Syndrome
Tobias with his mumma, Eliza. Source: Facebook

January 24th is Moebius Syndrome Awareness Day

As Eliza explains, 24 January is a day to wear purple and advocate for those who were born with this condition.

We hope by spreading awareness, we can encourage others to be more accepting of those who were born with not only this disability but any type of disability. “

Moebius Syndrome Tobias
Tobias, his mum, dad and little brother all wear purple for Moebius Syndrome Awareness Day. Source: Facebook

My fear for him isn’t the fact he is different, but rather the fact he will be treated differently. This is why inclusion and spreading awareness is so important for me. 

We want to raise our son to chase his dreams, just like any other child. We don’t want him to say, ‘I can’t’ without first trying. I know we don’t owe anyone an explanation, but one thing for sure is his dad and I want to raise him to be as confident in himself as possible.”

You can follow Tobias and his many adventures with his very loving family through his Facebook page, Tobias’s Journey.

What to read next

Author

Born and raised in Canada, Jenna now lives in Far North Queensland with her tribe. When the mum-of-three is not writing, you can find her floating in the pool, watching princess movies, frolicking on the beach, bouncing her baby to sleep or nagging her older kids to put on their pants.

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