Fund in Memory of Bella Flores

How it all began: Our daughter has been diagnosed with CPVT! Our story starts approx. 3 years ago, July 20th 2012…we went to SeaWorld, and Isabella ( 7 yrs. old) wanted to ride the new roller coaster…honoring her bravery we did it. Approx. 3 seconds into the ride she 'passed-out'. She remained unconscious the entire ride. I carried her off the coaster, laid her down, and to our good fortune she woke within seconds. Alert, oriented, and crying. The next event happened approx. 3 weeks later. She was at summer camp, and just fell over on the playground. The kids told the councilor, "Bella's sleeping and won't wake up!" (can you imagine hearing those words?). I was called by paramedics to the site, from their report it sounded like a similar event had taken place. 'Passed-out', woke within seconds. This time we went to the ER! She was admitted for observation, and was not discharged even after she appeared stable. We did a battery of tests to rule out brain or cardiac involvement (EEG, Brain MRI, EKG, LABS, Cardiac ECHO). All tests were inconclusive, neurology ruled out epilepsy or seizure disorder, and her heart looked great. They wanted to send us home. I insisted on an event monitor if we were to be discharged with no diagnosis for why she was fainting.

Approx. 3 weeks later, while on the event monitor, I got a call from her school. Bella was in the office crying because she had "tingles" all over her body, face, and mostly her hands. I arrived at the school to find her ringing and shaking her hands. The "tingles" seemed to intensify on our way home. I decided then to go to the ER. The ER staff took one look at her and labeled her with 'panic attack', hyperventilation, gave her a brown paper bag, and a sedative. The EKG monitor kept alarming, but the staff assumed it was artifact as Bella was wiggling around quite a bit. To our good fortune we never removed the event monitor and in the end that is what caught the hallmark rhythm that is CPVT. To the ER staffs’ surprise we were quickly transferred to Rady Children's Hospital, and put under the watchful eye of Dr. James Perry. Bella was immediately stared on beta blockers (atenolol) and the appropriate labs were sent for genetic testing. Testing came back positive for CPVT. Hanging on by a thread, we were very emotional and terrified of what the future holds for Bella, and even more terrified of a future without her!

Fast forward three years, Bella is a brave, thriving 10 year old, who struggles with her physical limitations at times, but overall is a confidant, exuberant child. We couldn't be more proud of her! She is now taking nadolol, and flecainide daily. We follow up with doctor regularly, she wears an event monitor every six months, and we check her flecainide levels annually as it is weight dosed. Other than that it's a waiting game. "The symptoms fuel the treatment", is what the doctors tell us. So we live cautiously optimistic, but we LIVE! We also attend the NYU Research Conference, and the SADS Family Convention annually. Thanks to them for all their support.