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Boy, 9, will NEVER smile because of a rare condition

A nine-year-old has spent his whole life without a smile because of a rare condition which only enables him to have one facial expression.

Justin Tiernan-Reese, was born with Moebius syndrome – a neurological disorder which causes facial paralysis, making him unable to move the muscles in his face.

His mother, Jessica, says her son questions her ‘Why can’t I have a smiley face?’ and will ask to use phone filters in photographs of him ‘so he can have a smile’.

She has had to come to terms with the gut-wrenching fact that she will never see her child grin, and the potential choking dangers the syndrome poses for Justin.

But she claims that despite the tough challenges and stares Justin confronts every day, he has an incredible personality, and has adapted to ‘own’ his situation.

Ms Tiernan-Reese, 27, from Shrewsbury, is desperate to raise awareness about how it affects her son and others who can’t express their emotions facially.

Justin Tiernan-Reese, was born with Moebius syndrome – a neurological disorder which causes facial paralysis, making him unable to move the muscles in his face

His mother, Jessica, says her son questions her 'Why can't I have a smiley face?' and will ask to use phone filters in photographs of him 'so he can have a smile'

His mother, Jessica, says her son questions her ‘Why can’t I have a smiley face?’ and will ask to use phone filters in photographs of him ‘so he can have a smile’

She said: ‘As Justin has gotten older he’s started to notice that he is different. 

‘It’s really difficult when he comes to me and says, “Mummy, why can’t I have a smiley face?”

‘It’s very difficult to explain to a child when they can’t do something that everyone else can do. Kids can be nasty.’

Ms Tiernan-Reese added: ‘On phones there is a filter that makes you have a smiley face, whatever your expression.

‘We were scrolling through and came across it. Now every time there’s a picture he asks for the smiley face filter.

‘People don’t notice if he’s getting upset. It’s a case of if you don’t know him, then you don’t have a clue about how he is feeling.

‘But I can see him smiling through his eyes, and because know him so well I’ve noticed he can get a slight dimple on the left side of his face when he’s in hysterics.

‘He understands happy, sad, and gets angry. But he struggles with complicated emotions.’ 

She had tests while pregnant with Justin as he seemed to display clubbed feet at her 20-week scan.

But the results came back clear because his Moebius syndrome – thought to strike around one in 50,000 people – didn’t show up in the womb.

She has had to come to terms with the  fact that she will never see her child grin, and the potential choking dangers the syndrome poses for Justin (pictured as a two-year-old)

She has had to come to terms with the fact that she will never see her child grin, and the potential choking dangers the syndrome poses for Justin (pictured as a two-year-old)

But she claims that despite the tough challenges and stares Justin confronts every day, he has an incredible personality, and has adapted to 'own' his situation

But she claims that despite the tough challenges and stares Justin confronts every day, he has an incredible personality, and has adapted to ‘own’ his situation

WHAT IS MOEBIUS SYNDROME? THE RARE CONDITION THAT CAUSES FACIAL PARALYSIS

Moebius syndrome is a rare neurological condition that affects the muscles that control facial expressions and eye movement.

The symptoms are present from birth as patients are unable to smile, frown or raise their eyebrows.

They often also have a small chin and mouth and a short tongue while dental abnormalities are also common.

The condition also affects the muscles that control the eyes so patients have to move their heads to look from side to side.

In some cases, patients are unable to blink or close their eyes which can cause eye dryness or irritation.

Other features of the syndrome include bone abnormalities in the hands and feet, week muscles, hearing loss and delayed development.

Moebius syndrome is thought to affect between one in 50,000 and one in 500,000 people – but its cause is unknown.

Source: US National Library of Medicine 

When he was born he struggled to breathe, and it was quickly evident that he also had difficulties feeding.

And with doctors apparently noting that Justin was not scrunching his face as babies do, a then-17-year-old Jessica was told her little boy had Moebius syndrome.

The full-time mother said: ‘The doctors said he looked like a little china doll. I could see what they meant. 

‘He was jaundiced when he was born too, so to me he just looked like this little orange china doll. 

‘He was beautiful, don’t get me wrong, I felt that immediate love for him.

‘The consultant told me that they believed he had Moebius syndrome, and that they didn’t know how it was going to affect him. He hadn’t seen it before.

‘The nerves were so weak that he didn’t have the strength in his face to latch or feed. Doctor’s can’t tell me what caused it.

‘You can see signs of distress in a baby’s changed face. But with him we couldn’t, and still can’t, tell if something was wrong. He could just manage to cry, but it wasn’t much of a cry.’

As she adapted to motherhood, Ms Tiernan-Reese, who was single when Justin was born, says it was very tough to feel left out as other mothers experienced their babies’ first smiles and milestones.

Ms Tiernan-Reese, 27, from Shrewsbury, is desperate to raise awareness about how it affects her son and others who can't express their emotions facially

Ms Tiernan-Reese, 27, from Shrewsbury, is desperate to raise awareness about how it affects her son and others who can’t express their emotions facially

When Justin was born he struggled to breathe

And it was quickly evident that he also had difficulties feeding

When Justin was born he struggled to breathe, and it was quickly evident that he also had difficulties feeding

She had tests while pregnant with Justin as he seemed to display clubbed feet at her 20-week scan. But the results came back clear because his Moebius syndrome didn't show up in the womb (pictured: a scan of Justin at 36 weeks)

She had tests while pregnant with Justin as he seemed to display clubbed feet at her 20-week scan. But the results came back clear because his Moebius syndrome didn’t show up in the womb (pictured: a scan of Justin at 36 weeks)

She said: ‘It was definitely a shock. For someone so young as well at 17, to be confronted with such a complicated situation was hard. You take it for granted that your baby will be born and will be fine.

‘We had to take it all as it came. We had to feed him with a pipette. At four months old he stopped breathing, and when that happened it shocked me into realising how complicated the syndrome really was.

‘It was really, really difficult. If he is sick then he is at risk of choking to a fatal point because he can’t move his face, so if he’s ill at home you can’t take your eyes off him in case he is sick.’

Ms Tiernan-Reese continued: ‘Things like going out with my friends and their children would be hard. I just felt so out of place.

‘It was a gut-wrenching feeling not to experience my baby’s first smile and to know he would never be able to have one.

‘He wasn’t verbal for the first four years of his life. I struggled with how to deal with it. My mum was my absolute rock.’

With doctors apparently noting that Justin was not scrunching his face as babies do, a then-17-year-old Jessica was told her little boy had Moebius syndrome (pictured at five months old)

With doctors apparently noting that Justin was not scrunching his face as babies do, a then-17-year-old Jessica was told her little boy had Moebius syndrome (pictured at five months old)

Against the odds, he can now talk, has mastered eating and drinking with his own techniques, and keeps everyone laughing with his incredible sense of humour

Against the odds, he can now talk, has mastered eating and drinking with his own techniques, and keeps everyone laughing with his incredible sense of humour

But she says that despite his situation, Justin amazes her every day with the way he overcomes day-to-day challenges.

Against the odds, he can now talk, has mastered eating and drinking with his own techniques, and keeps everyone laughing with his incredible sense of humour.

Ms Tiernan-Reese said: ‘Jay is such a unique and amazing kid. He goes to a special school because he also has global development delay.

‘He absolutely loves school. He’s made friends and he looks out for the younger ones. They all love him.

‘I never thought he would say “mummy”. When he was six and he said it, the feeling was incredible.

‘I wanted for so long to hear him talk that now I’m like, “Yeah, kid, you go for it.” He doesn’t stop. He’s my best buddy.

‘He’s adapted to life with the syndrome. He kind of owns it.’

The protective mother says she tries not to think too far ahead about what life holds for Justin as he gets older and inevitably encounters more questions and comments about his appearance.

Ms Tiernan-Reese said: 'Jay is such a unique and amazing kid. He goes to a special school because he also has global development delay'

Ms Tiernan-Reese said: ‘Jay is such a unique and amazing kid. He goes to a special school because he also has global development delay’

The protective mother says she tries not to think too far ahead about what life holds for Justin as he gets older

The protective mother says she tries not to think too far ahead about what life holds for Justin as he gets older

She said: ‘He understands that he is different. It’s his own, personal battle. When it does come up, I explain this is why he is special.

‘He will sometimes say a place is busy, and that’s his way to say, ‘I’m being looked at and I don’t like it.

‘He knows that people can be nasty, though at the moment he doesn’t always see they are mocking him.

‘I reached out to communities online, that way you don’t feel 100 per cent on your own. I can show him that there are other people in the world like him, he just doesn’t see them.

‘The other day we went to the park, and some teenagers walked in. My first instinct is to leave with him before someone says something.

‘But then I thought, why do I do that and shield him? People need to be educated. Ignorance breeds ignorance.’

And she hopes to encourage strangers to talk instead of stare, and ensure they do not take smiling for granted – an unconscious, yet precious ability for so many.

Ms Tiernan-Reese said: ‘I want people to understand. Justin’ not going around with a sign saying, ‘Don’t talk to me because I can’t smile.

‘People can talk to us. We want people to talk to us because that’s how people learn about this syndrome.

‘Just because it only affects a few people doesn’t mean it doesn’t matter.

‘We are grumpy in Great Britain. That’s the way we are, you don’t see many people smiling. We take it for granted that we can.’

Moebius syndrome is a rare neurological condition that affects the muscles that control facial expressions and eye movement (pictured as a three-year-old)

Moebius syndrome is a rare neurological condition that affects the muscles that control facial expressions and eye movement (pictured as a three-year-old)

Moebius syndrome is thought to affect between one in 50,000 and one in 500,000 people

However, its cause is unknown

Moebius syndrome is thought to affect between one in 50,000 and one in 500,000 people – but its cause is unknown

Ms Tiernan-Reese said: 'He understands that he is different. It's his own, personal battle. When it does come up, I explain this is why he is special'

Ms Tiernan-Reese said: ‘He understands that he is different. It’s his own, personal battle. When it does come up, I explain this is why he is special’

Ms Tiernan-Reese hopes to encourage strangers to talk instead of stare

And she wants to ensure they do not take smiling for granted – an unconscious, yet precious ability for so many

Ms Tiernan-Reese hopes to encourage strangers to talk instead of stare, and ensure they do not take smiling for granted – an unconscious, yet precious ability for so many



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