Being Me: Sarah

Though born with CHARGE syndrome, 22-year-old Sarah Dalton doesn’t let it define her. She’s an avid equestrian, a Special Olympics Global Messenger, and after 32 surgeries, somewhat of a medical expert too.

Sarah Dalton is a positive young woman who lives with CHARGE syndrome, a rare syndrome that affects all her senses. 

Having had 32 operations in her 22 years, daily life can be complicated. Mum, Kelsey, puts it simply by saying ‘CHARGE kids have to think about breathing, swallowing, hearing and then they learn.”

As part of her morning routine, Sarah must practice her swallowing with a prompting app on her phone. “Five times every morning. It sounds like I’m getting a text but I’m not I’m just doing my swallow prompt.” says Sarah. 

Sarah Dalton, counting her breathing.
CHARGE Syndrome is a rare genetic disease that results in multiple chronic illnesses.

For Kelsey, her main worry is that Sarah will choke and with her increasing independence she may not be able to help her. 

“I’ve done CPR on Sarah probably three times and I wouldn’t even count the number of times she’s choked or gone blue. When you stop and think about it that’s pretty scary.”

A few days after Sarah was born she received her first operation on her heart followed shortly by her trachea.

Sarah sitting on a swing in a playground, wearing a shirt that says; "It's cool to be kind"
Sarah's positivity is infectious.

Despite her health challenges Sarah is as positive a person you’ll meet, her favourite shirt dons the slogan, ‘It’s cool to be kind.’

Some people can be really unkind when you have a disability,” she says “so I agree with this motto. It’s definitely cool to be kind.”

Kelsey admits her daughter has had a rollercoaster school experience.

Sarah outside using a walking cane.
Sarah uses a walking cane because of her low vision.

“At primary school, she had a good friendship group because she was like a little doll. But at intermediate there was bullying.”

Sarah has been the target of other people’s negative offloads.

“People can be really unkind when you have a disability because they can think you don’t have feelings. One day this guy he threw a rock at my head.”

To keep herself happy she listens to upbeat songs.

“I try to look on the bright side and friends and family I have. I try to think of kind people because there is probably kind decent people out there who would have a nice heart.”

 

“I try to look on the bright side and friends and family I have. I try to think of kind people because there is probably kind decent people out there who would have a nice heart.”

Sarah has tried many activities but her favourite one is horse riding. She has won multiple medals in tournaments competing against disabled and able-bodied people. It has also helped her to get stronger by improving her physical and breathing skills.

Her closing words of wisdom are a quote with a Sarah-style twist.

“Horse-riding, I legit get back on the horse; but in life, I try to get back on the horse, climb that mountain.”

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