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Name:  Olivia Kenworthy
Age:  12
Which SADS condition do you have? Long QT Syndrome
When were you diagnosed?  2 yrs old
How are you treated? Beta Blocker

How/when were you diagnosed?
An aunt “passed out” at work doing jumping jacks.  She was diagnosed with LQTS.  Genetic testing done.  Dad was diagnosed and then Olivia through genetic testing.

What has been the biggest challenge you’ve faced in living with your diagnosis?
Sports.  Olivia is a natural athlete and loves all sports.   I (her mom) always fear the worst and always wonder if sports is the right option.  I could make her unhappy by not letting her enjoy what she loves or I can make the biggest mistake by letting her play.

What is one positive thing that has come out of your diagnosis?
Awareness; when she has kids she will be more informed.

What encouragement or advice would you give someone who has just been diagnosed with your condition?
Get with other people who have a heart condition like this.  It is ok to get second opinions with treatments and doctors.  This is a rare condition so get the best medical care; don’t settle.

What does your day-to-day life look like?
She goes to school, plays volleyball….just your typical 12 yr old.  Behind the scenes, there is an AED nearby and an adult who is aware.

What are your favorite hobbies and activities?
Olivia enjoys volleyball and outdoor adventures/travel with her family and friends.


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