Man born without a jaw is now happily married

Man, 41, born without a jaw who can’t eat, speak or breathe properly admits bullying left him suicidal – but says finding love with his wife has helped him believe in himself

  • Joseph Williams, 41, from Chicago, was born with otofacial facial syndrome
  • Communicates using sign language and notes as he was born without a jaw 
  • Welder tied the knot with wife Vania, 39, in 2020 and hopes to become a DJ

A man who experienced severe bullying throughout his life after being born with half of his face missing has revealed he no longer lets his condition hold him back and has tied the knot since improving his self-esteem.

Joseph Williams, 41, from Chicago, was born with an extraordinarily rare condition called otofacial facial syndrome which left him without a jaw.

The welder said people have run away from him in fear but he hasn’t let his condition hold him back from anything in life.

After meeting his wife, Vania, 39, in 2019, Joseph is happily married and loves travelling and socialising.

Joseph Williams, 41, (pictured) from Chicago, has refused to let being born without a jaw hold him back in life 

Joseph, whose twin tragically passed away before they were born, has a rare condition called otofacial facial syndrome. Pictured: Joseph as a baby 

Having experienced people running away from him in fear, Joseph went on to marry Vania, 39 (pictured) in 2019

Joseph, who doesn’t know the cause of the syndrome, communicates through sign language, gestures, writing notes and using his phone.

He eats by putting blended food through a tube into his stomach.

Joseph said: ‘Being born without a jaw came as a shock to my birth mother.

‘I was a twin but the other baby passed away before we were born.

‘When I was just a couple of days old, I was taken from Illinois, where I was born, to Chicago, for multiple surgeries.

Joseph (pictured) has learnt to communicate through sign language, gestures, writing notes and using his phone

Joseph said surgery to construct a jaw using skin grafts was unsuccessful and he was put up for adoption as a child (pictured)

Joseph (pictured) said being born without a jaw was a shock for his birth mother and it has caused him many problems 

‘I had a bone and skin graft as they tried to construct a jaw for me, but as I grew my body rejected it and it was unsuccessful.

‘And I was also put up for adoption which led to me meeting my adopted family.

‘Growing up was hard and being born like this has caused me many problems, but I have tried not to let it affect me.

‘I can’t eat, speak or even breathe properly.

‘I have a tube in my stomach which I can place blended food into, but this means that I have never tasted food.

The exceptionally rare lifelong condition which sees children born without a JAW

Otofacial syndrome is a rare congenital deformity in which a person is born without a mandible, and without a chin. 

In nearly all cases, the child does not survive because it is unable to breathe and eat properly. 

Even with reconstructive surgery, the tongue is extremely underdeveloped, often making unaided breathing and swallowing impossible. 

The first challenge to survival is assisted breathing and tubal feeding. This is a lifelong affair, generally requiring the patient to spend nearly all of the time under direct hospital care.

In 2008, Alan Doherty, then-19, from Donegal, was propelled into the national spotlight when he embarked on an 18-month series of operations for a new chin.

His parents had been told he was unlikely to survive at birth and he spent much of his early life in hospital.

While he could manage not being able to talk or swallow, he found it difficult to deal with people constantly staring at him in the street. 

After a huge fundraising effort by friends, family, and other people in the local area, he became the first person to have a series of operations to create a new jaw and chin. 

In a process of nine different operations, doctors took a piece of bone from his hip and carved it into the shape of a jaw.

They then implanted the bone into his back to help it grow nerves and supportive tissue around it.

Later, it was removed, before it was then attached to his face, with extra tissue added to make his new chin look as realistic as possible.

However in 2009, he questioned whether he should have gone through with the surgery. 

Speaking to the Irish Independent, he said he had been left with facial scarring and deep scars on his back and groin from the operations.

He said: ‘I didn’t expect to be all destroyed, messed up.

‘If I were made aware of how my back and jaws would turn out like before I went through any of the procedures, then maybe I wouldn’t have gone through the operations.’   

‘I have a tube in my neck, called a trachea, which helps me breathe.

‘And I was taught sign language when I was two years old, to help me communicate.

‘However, since then I have also found other ways to help me communicate such as making notes and typing into my phone.’

Joseph had a hard time growing up with his condition and faced people running away and bullying him throughout his life.

He admits to sometimes wanting to hide away and cry, and that he has even considered taking his own life.

Joseph, who is unable to eat, speak or breathe properly, has been bullied throughout his life and even considered taking his own life. Pictured: Joseph during his school years 

Joseph said he has never tasted food as he has a tube in his stomach that he places blended meals in 

Joseph said he understands that some people will think he is ugly and not accept him, but he should still be treated with respect

But, he reminds himself that there is a reason he was born this way and that he just needs to show people who he really is.

Joseph said: ‘I understand that I am different and that some people will think I am ugly and not accept me, but I am still a person who has a heart, feelings and a brain.

‘I should be treated with respect, just as anyone else should be.

‘I’d rather people just come up to me and ask me questions, rather than staring or pointing.

Joseph admits that he found dating difficult because he had ‘low self-esteem and felt worthless’, however he met his wife after he started to believe in himself 

‘As I was growing up, everyone tried to protect me by telling me I couldn’t do this and that.

‘But I didn’t want my condition to hold me back and I didn’t want to be limited.

‘Dating was also hard for me because I had such low self-esteem and felt worthless, but when I started believing in myself and realised I deserved more I ended up finding my wife.

‘We met a work towards the end of 2019. We got talking and she admitted she thought I was a gang member and that’s how I lost my jaw.

Vania (pictured left) admitted that she thought Joseph had lost his jaw as a gang member before they fell in love and married in 2020 

‘We were friends at first, but we eventually started dating and fell in love.

‘We got married in 2020. I’m sure people would never have expected me to get married. To be honest, I didn’t think I would either.’

Joseph also has a passion for music as it is a way for him to express himself.

He loves DJing and playing the drums.

Joseph added: ‘My dream is to become a DJ one day. I can sometimes struggle with communicating but music is a way for me to express myself.

Joseph, who hopes to become a DJ, said he wishes people would speak to him and ask questions instead of staring at him

‘Although sometimes I want to hide away from the world and cry, I have to remember that there is a reason that God made me like this.

‘He gave me this load because he knew I could carry it.

‘Being born without a jaw has given me a different outlook on life and it has made me who I am today.

‘People stop what they are doing to stare at me and it gets annoying. I’ve even had one guy stop his car, turn around and drive by just to look at me.

‘I just wish people would speak to me and ask me questions rather than looking at me like a deer in the headlights.’

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