On June 6th, Joe Quigley and his daughter Olivia came to D.C. to urge their Massachusetts Members of Congress to protect NIH Funding from automatic budget cuts set for January 2013. When Olivia was just 6 years-old, she suffered a sudden cardiac arrest will in gym class and came to Capitol Hill to tell her story. Her and father meetings included one with Senator Scott Brown.
Read their story below.
My name is Joe Quigley. When my daughter, Olivia, was just six years old, she suffered a SCA during gym class at her school in East Boston. Two teachers who were trained in CPR immediately started to work on her. They worked on Olivia until the EMT’s arrived seven minutes later. The EMT’s then used an AED to restart her heart and Olivia was transported to Mass General Hospital Boston and admitted into the ER. Olivia suffered a second SCA that same day and once again CPR and an AED were used to save her life. Olivia was put into a drug induced coma and put on life support for a week. Prior to that day, Olivia had no preexisting heart condition that we were aware of. In fact, just two days before her event; she had been given the all clear by her pediatrician at her annual checkup. During her stay at MGH, Olivia was given numerous tests including viral and genetic testing to try and find a diagnosis. Unfortunately, every test came back negative and we still to this day have no answers. Olivia has an ICD and is on daily medication. She has a heart monitor next to her bed that reads her heart functions and relays that information back to her cardiologist.
Although it is comforting to know that she is getting the correct treatment, not having a diagnosis is still a big worry. Olivia has a 15 year old brother, Alex, and not having a diagnosis for Olivia means that he could also be carrying the same genetic problems. He could just be a time bomb waiting to go off. What would be the chances for his survival? We continue to search for answers. Olivia is currently in a gene pool research investigation being conducted at Children’s Hospital Boston. I wait every day for the phone to ring with an answer to our questions. Research is so important for us to find out these answers. To find out what happened to Olivia, to potentially have answers for Alex and for all the other kids that we don’t know have a heart condition, we need funding for research.