The story of Callie
Callie had a sudden cardiac arrest just after her 1st birthday after contracting a vomit bug. Callie was a healthy baby girl for the first year of her life and meeting milestones. Until the unexpected happened. After a month of being in ICU/hospital we finally received genetic testing back which was one of the last tests they had done to find out why she had the arrest. It came back with PPA2 mitochondria condition that affects the heart and causes cardiac arrests. Unfortunately there is barely any research. No treatment nor cure. The people we rely on (doctors) for reassurance couldn’t even give us that. Eventually after months on end in hospital so everybody could figure a plan. Eventually Callie had to get implanted defibrillator ICD incase she was to have an affect again as a back up. Although not always a guarantee as we all are aware of. Callie was significantly brain damaged due to the arrest. But is now 2years old and regain rehabilitation crawling. Laughing, talking, smiling and starting to walk. She still has an ng tube for feeding but slowly we are working on getting oral feeding back. PPA2 is a mitochondria condition that affects the heart triggers for example are Alcohol/ethanol which contains in most medicines even foods. Vinegar and vanilla extract. Viral illness/sicknesses and temperatures. Which are all things kids get on the daily so we are constantly trying to protect her best we can.