Name: Danielle and Alanna Mundondo 
Age: 34 and 4
Which SADS condition do you have? Long QT Syndrome Type 2
When were you diagnosed? Age 19 via abnormal ECG and genetic testing for Danielle.  At birth via cord blood genetic testing for Alanna.
How are you treated?  Betas for both of us, I (Danielle) have an ICD and Alanna carries an AED with her (in her cute rolling backpack of course). 

What has been the biggest challenge you’ve faced in living with your diagnosis?
My biggest challenge as a mother to Alanna, a child with LQTS, is to know just how protective/ restrictive I should be. Dr. Ackerman at the Mayo Clinic and Drs Vetter and Shah at CHOP have been amazing in helping me navigate this part of our journey!

What is one positive thing that has come out of your diagnosis?
I do not take anything for granted anymore. My life, my child’s life, our access to amazing doctors, insurance coverage, etc. Facing my own mortality at a young age was difficult but in the end has made me stronger and to appreciate every single day!

What encouragement or advice would you give someone who has just been diagnosed with your condition?
It is 100% possible to live and thrive with LQTS! Diagnosis and treatment is key! Alanna and I both live and thrive with this condition! Follow your EP’s treatment plan, advocate for yourself and be aware of triggers and risk factors- but otherwise- live your life. 🙂

Click here to read more about Alanna and donate to SADS in her honor.  

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