Ramona’s Happy Hearts
We are walking in honor of Ramona! She’s a sweet & spunky 3 year old with hypertrophic cardiomyopathy (HCM). She loves to play with her sister, eat pizza, and put on shows singing and dancing. Our team name is “Ramona’s Happy Hearts” to reflect how joyful and full of life she is!
Ramona wasn’t diagnosed with HCM until she was 6 months old, and her condition was discovered after our new pediatrician noticed that Ramona had a heart murmur and would easily get really sweaty, especially when eating. Because of those two things, we were referred to the Congenital Heart Center at the Children’s Hospital of Illinois to get her heart checked out. It was there that she was diagnosed and has received frequent care for her condition.
To cram a long story into a paragraph, she’s had many follow up appointments with echos to check her heart function and muscle thickness in the 3 years since she was diagnosed. After some concerning episodes in 2018, she had a Loop Recorder put in, which is a small monitoring device implanted under the skin on her chest that watches for irregular heart rhythms. Her loop recorder soon revealed some scary pauses in her heart rate, and she was referred to Lurie Children’s hospital in Chicago for a heart transplant evaluation. They found that the problems with her heart rate were being caused by an issue with a medication she was taking at the time, and, after the medication was stopped, her condition improved and it was determined that a transplant was not yet necessary. Though she continues to do well, we recently purchased a defibrillator (at her doctor’s recommendation) to keep at home due to her risk of cardiac arrest.
Despite her ups and downs, Ramona has been living life to the fullest! She’s silly, vibrant, active, and passionate. She’s so excited to join a tumbling class with her sister soon, and she’s loving the chance to play outside now that it’s finally warming up. We still have regular appointments to keep an eye on her heart, and we understand that a transplant will likely be needed at some point. But, in the mean time, she’s one happy girl. 🙂
CaptainBethany Barr$50.00 raised