Utah woman with Treacher Collins has had 56 surgeries

A woman with a genetic facial defect has spoken out against bullies who presume she has learning disabilities because of how she looks.

Katie Whicker says she’s tired of people regularly accusing her of being ‘stupid’, speaking slowly to her and insulting her because of her appearance.

The 21-year-old was born with Treacher Collins syndrome, which stopped the bones growing and developing properly in her face when she was in the womb.

Over the years, she’s had 56 surgeries to repair her face, including building her jaw from her own hip and rib bones.

The ski resort worker says people are regularly rude to her, calling her ‘dumb’ and doubting her mental capabilities. She was once even asked if she was involved a car accident.  

 

Katie Whicker, from Salt Lake Valley in Utah, US, was born with Treacher Collins syndrome

The 21-year-old has called on people to not make assumptions about her mental capabilities based on her looks

The 21-year-old has called on people to not make assumptions about her mental capabilities based on her looks

Now, Katie, from Salt Lake Valley in Utah, US, has called on people not to be prejudiced against those with facial differences in a video.

Katie said: ‘Because I have a physical difference people think I have a mental difference too, so I feel like I’m always explaining or proving people wrong.

‘There are a few cruel people out there who I have to ignore and others who just don’t realise what they say can be hurtful. 

‘I’ve had a person come up and say to my face “You shouldn’t work here, because you’re stupid” which was unbelievable. That really hurt.’

Katie had surgery which involved having her jaw broken and screws turned to create new bone

Katie had surgery which involved having her jaw broken and screws turned to create new bone

WHAT IS TREACHER COLLINS SYNDROME

Treacher Collins syndrome affects the development of bones and other tissues in the face.

The signs and symptoms vary greatly, ranging from almost unnoticeable to the severe.

Most sufferers will have underdeveloped facial bones, most notably the cheekbones, and a very small jaw and chin.

Some people born with the condition are also born with a cleft palate.

In severe cases, underdevelopment of the facial bones may restrict an affected infant’s airway, causing potentially life-threatening respiratory problems.

People with TC often have eyes that slant downwards, sparse eyelashes, and notch in the lower eyelid, known as an eyelid coloboma.

Some affected individuals can lose their vision.

The syndrome is characterised by absent, small or unusually formed ears.

And hearing loss occurs in around half of all sufferers.

It is usually caused by defects of the three small bones in the middle ear, which transmit sound, or by the underdevelopment of the ear canal.

The condition affects one in 50,000 people and is caused by mutations of a specific gene. 

Tracheotomy saved my life

Katie was diagnosed with the syndrome – which affects one in 50,000 people – at birth and immediately had a tracheotomy fitted to help her breathe.

The problems with her airways affected her ability to communicate and her parents used sign language with her as an infant. 

Katie said: ‘When I was born I couldn’t breathe through my nose, turning a blueish colour, due to my condition so had to have a tracheotomy put in to save my life.

‘When I cried as a baby the noise was so airy that no one could hear me, so my parents had to watch my face to see if I was laughing or crying.’

Having a one-way valve for her tracheostomy tube allowed her to produce sounds and defy speech therapists predictions.

‘I mainly used sign language to communicate up until the age of three, when I used both signing and speech,’ she added.

‘Then around the age of five, my parents tell me I couldn’t stop talking.’  

School bullies 

Katie said bullying made her time at school very difficult.

But she says she defied the bullies who didn’t believe she was intelligent by beating them in exams.

She added: ‘There were a few bullies who would ask what’s wrong with me.

‘Then there were others who thought I must be stupid, until I beat them in the spelling bee and other tests.

‘Overall, I surround myself with good people and try not to let people’s negative words affect me, the people who matter don’t judge me.’ 

The ski resort worker says school bullies made her childhood a tough one

The ski resort worker says school bullies made her childhood a tough one

Katie, pictured graduating from school, defied the bullies who presumed she is stupid because of how she looks by studying hard

Katie, pictured graduating from school, defied the bullies who presumed she is stupid because of how she looks by studying hard

Endless operations 

Katie has also had operations to open her nasal passage and a feeding fitted to help her receive enough nutrients.

During her most recent surgery in May, Katie had part of her hip bone implanted into her face requiring her to have her mouth wired shut for eight weeks.

Katie said: ‘I didn’t have all the bones in my face necessary to create a proper jaw, so they did a jaw distraction where they place pins in there, break the jaw and turn screws to create new bone.

‘But even now I have to be careful not to break my jaw or chew on anything that could cause damage like an apple, steak or anything tough.

‘My goal is to be able to eat whatever I want and over time I want to live a more normal life but if I can breathe, eat and talk I’ll consider myself lucky.’

She says she would prefer people approach her and ask questions about her condition, rather than just stare or assume she's slow

She says she would prefer people approach her and ask questions about her condition, rather than just stare or assume she’s slow

Over the years, Katie has had 56 surgeries

Over the years, Katie has had 56 surgeries

Ask questions, don’t presume 

Now Katie is encouraging the public to ask questions rather than make assumptions.

She said: ‘Because I have facial difference some people believe my mental capabilities are impaired also, they don’t ask questions they just assume and are most definitely mistaken. 

‘Maybe I’m not perfect looking but I’m mentally capable and not a bad person whatsoever.

‘This is how I was born – my bones are deformed but I can talk, see, smell and taste; it’s just my bones that didn’t grow properly in the womb.

‘I’d much rather people come up to me and ask questions, rather than just staring or assuming I’m stupid.

‘Some parents try to stop their kids from asking questions but in honesty I much prefer it to people staring and wondering.

‘I want to raise awareness of this issue and help others to realise that no matter what their problems are they can get through them.’

You can follow Katie’s blog here.   

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