I am writing in support of the Children's Cardiac Safety Act. My family carries a gene that people only first become aware of when someone suffers a sudden cardiac arrest. I have been "lucky" and was diagnosed after four years of failing health, and fortunately my only child does NOT carry this gene. But I want to speak for families who aren't aware of the how medical testing can save them. This lifesaving act can help save many families the devastating loss of a child. If you are pro-life, pro-children, and/or pro-family, please pass this bill.

I have watched what this heart condition has done to my mother and now my sister. I am a daycare teacher and my goal is to become a teacher. I want to see more testing for children so that we don’t loose any children because they didn’t know they had this condition

I was diagnosed at the age of 41 with HOCM, hypertrophic obstructive cardiomyopathy. When I heard these words I didn’t know what that meant only how I was feeling. So google here I come and what does it say “sudden death”. Scared is an understatement, I am a mother of 4 children and a Mimi to 2. To find out that all those times I went to a Dr and told them how I was feeling and was told it was anxiety or your exhausted, was not the reason! I was scared, mad, lost and felt a little in control because now I had a clue of what I was dealing with. 6 months after being diagnosed I had an ICD placed and 3 months after that started CAMZYOS. Then it was to find out if I had the gene that contributes to this and well guess what I do. So I had my children tested and my grandchildren, the youngest being my grandson who is 2. I spent weeks praying please don’t let them have what I have and my prayers were heard for 3 of my children but my oldest daughter who is 22 was not fortunate she has my gene, but thankfully her son does not! When my daughter was younger she ran track and she had some issues with being sob and chest pains when she was a preteen. I took her to the doctor and they said she has a murmur nothing to worry about. Children are born with them all the time and they usually close. So she stopped running track because she hated how she felt, I’m glad she did now because one doctor could have made a decision to do more testing and didn’t. Something could have happened to my daughter all because she has Hcm and I didn’t know that I even had it. We as a country need to do more for our children. We need to have more testing done to make sure if something is going on we have it looked further into and not be denied by insurance. I have days where it takes all I can to go to work because of the skipped beats, fluid retention and exhaustion, light headed, low blood pressure. If a doctor would have listened to me back years ago I wouldn’t be where I am. So please get these young children tested, make it mandatory where they have screenings and ekg and echos done if anything is suspected. Family history isn’t enough because I don’t know mine to give it to a Dr. Thank you for reading this.

As a mother who has Hypertrophic Cardiomyopathy diagnosed at 71 and a son ,48 who was misdiagnosed for 20 years and has obstructed Hypertrophic Cardiomyopathy I plead with you to pass the Children’s Cardiac Safety Act!!! My son has had open heart surgery called an myectomy to help his heart fill better. He now can go up stairs without shortness of breath. Early diagnosis will help save lives ! Getting proper care and treatment for this disease will help save children from the devastating effects too! This genetic disease requires early diagnosis and treatment! The Children’s Cardiac Safety Act will help save so many lives! Pass this Act for our children!! HCM can be debilitating !! Thank you so much for your attention to this important issue!!

Please pass this bill. Testing as part of youth sports participation can prevent the untimely death of a young athlete due to Hypertrophic Cardiomyopathy (HCM) and possibly other diseases. We owe to our youth to do this.

Passing the Children's Cardiac Safety Act is crucial in saving lives. Sports physicals are extensive in the amount of history is needed of the child and the child's family in hopes of identifying those who may be at risk for unknown heart conditions/disease that could end tragically for a student athlete. This thorough level of questioning and family history review should be done for every single child at well child exams. Most of the general population is unaware of the genetic connection to heart disease such as hypertrophic cardiomyopathy. In just exposing every parent to these questions, it will inform them and give them the opportunity to ask questions of their child's pediatrician. Knowledge is power and with that knowledge they can help others in their family or even friends they come across that may have a questionable situation that raises a red flag for possible heart disease. By enabling more people to become knowledgeable about HCM and other heart diseases, they will be armed with the power to share this lifesaving information with others. My son was diagnosed with HCM when he was 3 and was implanted with an ICD at the age of 14. His heart is 3 times the size of a normal heart, but you would never know this because he is not symptomatic - yet at high risk for sudden cardiac arrest. He was the first diagnosed with hypertrophic cardiomyopathy in my family. We traced the genetic mutation through me, to my father and my grandmother who lived to be 101. She had at least one other sibling (out of 11) that we identified to have the gene through testing. So, we know one of my great-grandparents also had the gene. My son was diagnosed because we were an active-duty military family and moving often - new doctors with new questions and referrals to cardiology. We feel fortunate his diagnosis came so early so we could get him the best possible care while we moved around the country. So many others are not so fortunate and only connect the dots of family history after a death occurs. This is exactly what happened in our family. I had a cousin that passed away awaiting a heart transplant over 25 years ago that they believed was caused by a virus that attacked his heart. After my son was diagnosed, we reviewed my cousin's autopsy report, and it was concluded that he had hypertrophic cardiomyopathy that was never diagnosed and progressed to end-stage so very quickly. He left behind a wife, 5-year-old daughter, and 6-month-old son. We can save lives through this measure with the collective efforts of simple communication. Please pass the Children's Cardiac Safety Act today without hesitation or delay. I would also ask that the State of Virginia consider passing a requirement that not only do student athletes need a sports physical to participate but also marching band students. My younger son, who is an athlete and not at risk for hypertrophic cardiomyopathy because of he was gene negative for the mutation, was a part of the marching band his first year. This activity is extremely physically demanding on students, much so like sports. They practice in the heat of summer, marching and carrying heavy instruments. Students can easily get heat stroke and often get sick just like athletes after a hot practice. Marching Band should be considered much like a sport for these reasons and students should have to complete the same physical forms by a physician. Thank you for your consideration and time.