Which SADS condition do you have? Timothy Syndrome
When were you diagnosed? 10 months for LQTS & 1 year for Timothy Syndrome
How are you treated? Beta blocker (propranolol), ICD (implanted February 19, 2019)
How/when were you diagnosed?
The anesthesiologist noticed long qt during open hip reduction to correct
Developmental Dysplasia of the Hips.
What has been the biggest challenge you’ve faced in living with your diagnosis?
Her tachycardia on February 17, 2019
What is one positive thing that has come out of your diagnosis?
During her cardiac event we were able to use an AED that the Gentile family gave to us. The device administered a shock and saved her life and she’s still with us.
What encouragement or advice would you give someone who has just been diagnosed with your condition?
Reach out to the community of individuals with the same diagnosis and ask them anything. It can save your child’s life and improve your quality of life by learning from others.
What does your day-to-day life look like?
Aurora is still learning to walk because of being born with dislocated hips and hyper mobility so she has physical therapy three times a week but besides that pretty normal.
What are your favorite hobbies and activities?
We like to go swimming and hang out with friends.
If you would like to donate to TSA in honor of Aurora,
you may do so here.
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